Decompression Surgery

The morning of the surgery, Faith woke unwell as usual. My husband came in early so we could entertain Faith while we waited for her to be taken to the operating room. I could tell she was hungry and wanted her bottle. She was now on formula as I stopped expressing milk in December 2010. I felt trepidation, fear, are we doing the right thing? I wanted to cry. I dressed Faith in a new little outfit I bought. It was so cute, it was red and blue with stripes. At last we were called to go down to the surgery admission room, we entered, it was all white. There were four spots to sit and conduct observations before the patient was taken into the operating room. Nerves were welling even more in my tummy. I held Faith tight. I didn't want to let her go. We sat on the seat closest to the door near the theatres. The anesthetist said that we couldn't come in and stay with Faith until she went to sleep and I had really wanted to. Instead, a nurse came, picked Faith up and she was smiling and through the double doors they went. My heart sunk, had we done the right thing, this was wrong, I don't want her taken away from me. I cried. I hoped I had brought enough tissues. It was thought the surgery would take at least a couple of hours so we didn't need to go straight back to the surgery waiting room. We went to get some breakfast.

As we were coming out of the lift, the consultant neurosurgeon came in, he was holding a little blackish box with little silver dots on it. We assumed this must be the special instrument that was borrowed from the Melbourne Children's Hospital. I am pretty sure he knew it was us but he was on his way to theatre to operate on our little girl. How are we meant to function during this time! A bright spark that day was we got an unexpected but blessed visitor. As the hospital is a catholic hospital in each room there is always a cross hanging on the wall. The room we were in didn't have one. It is always a good reminder of what Christ has done for us by having it hanging there. It forces it into my mind. My husband mentioned it to a friendly lady at the hospital reception and we didn't think much of it after that. But that afternoon when our heart ached, our minds wandered and thought of what might happen. A man walked into the parent's lounge and asked for us, he came over and said that he worked in pastoral care and the lady at reception mentioned us. He was a little light in our darkness, he handed us a palm cross so we could always remember by holding it in our hand. How beautiful!  I held it tight and prayed and prayed.

A few hours into our day of anxiously waiting my mobile rang and it was Dr JC, the neurosurgeon fellow, my heart skipped a beat, butterflies rose, I started to sweat, and she said that they haven't started the operation yet as they have been unable to get a drip into Faith (the one from the previous night had tissued). The anesthetist was working very hard to get a secure line in so they could begin. We were thinking that they might be nearly done and they hadn't even begun. Tears welled in my eyes, back to waiting. After a while of aimlessly wandering the through the peaceful grounds of the hospital we returned to the parent's waiting room. There were families seating around all looking tense and stressed. Every now and then the room telephone would ring and someone would anxiously answer it and some anxious parent hastily disappeared out of the room. One by one, families came and left. We just waited! It was like time was standing still for us and everyone was moving on and we were left behind. I flicked through magazines, had a crack at the Nintendo, tried to read a book but nothing could help. I just wanted Faith. At last, my mobile rang and we were asked to come back to the surgery admission rooms. Remember to breathe! We hurried back to the surgery admission rooms and went in and the nurse showed us to a private room where we were to wait. What was about to happen I did not know. But I was frighten and started shaking a little. I felt like I had tuned out and was in a strange cloudy daze.

We sat down in a small room and a few minutes later, but it felt a lot longer, the consultant neurosurgeon came in. He was dressed in green surgical wear. He started talking and I suddenly couldn't look into his face, I was afraid of what I might see. Instead, I stared at the floor and my eyes traveled to his shoes. His shoes I can remember, suede black sort of colour and there was blood on them, blood, my Faith's blood. He was saying they got as far as the laminectomy (part of one or more vertebrae is removed) and Faith started bleeding, she had lost 100-150mls of blood. I hadn't thought about this before. He said that he'd rather come in and tell us that they aborted the surgery than say they continued and she didn't make it. This was serious. I felt light headed and dizzy. Faith had to have a blood transfusion and would be in recovery in about an hour and we could go and see her soon. I can't remember much else he said, as I was staring to much at his shoes. His shoes with Faith's blood on it. This was to much. Now, I urgently wanted to see Faith. My husband later told me that the neurosurgeon used another technique to see if that would help, he scored the dura. The dura is the thick outer covering of the brain and spinal cord. Dural scoring is a surgical technique where a series of cuts are made into the dura, but the dura is not completely opened. Now we had to wait for Faith to go to recovery.

Paediatric Intensive Care Unit (PICU) was a secured area. We buzzed in and got into the waiting area. It was a rather long corridor with seats all along it, a small play area and at the end a hand basin to wash your hands before entering and hand sanitizer too. I remember there was no hand towels to dry our hands. We sat down as it was all to much, I started to cry and my darling husband comforted me. There were double doors and single doors and then as I looked up I saw this little pale, very still baby go past and it was Faith. There were nurses and doctors wheeling her into the other secured area. Too much, this is all too much, her head was swollen and secured so she didn't wiggle. I could hear her panic cry. She needed me. Not people she didn't know. The kindly Dr JC, neurosurgeon fellow came in and said to me what is wrong? She said, Faith is ok and I said it is all to much and I just want to see for myself that Faith is ok. The lovely doctor reassured us and sat with us a minute. It meant so much she'd taken the time to sit with us. They needed another half an hour to settle Faith into PICU so we had to wait. So much for the half an hour it turned into at least two. We knew Faith was inside those doors and we were not allowed in there yet.We just had to wait again!

Waiting for Decompression Surgery

We were home again but still with the same problems as when we arrived in Brisbane for a hopeful answer. The spina bifida clinic was only a short time away and we were going to have to do something. Faith couldn't live like this and nor could we. There was no escape for Faith from the pain, vomiting and suffering, day after day it went on. It went on into every night and we reached a point when we needed a game plan to educate these doctor's on what life is like for Faith and how she is symptomatic for both the syrinx and the arnold chiari. But how? We decided to get the social worker involved. We sent her an email outlining what Faith goes through every day and every night. We explained how life was and how we were feeling about the situation and the lack respect for the parents opinion. When we arrived at the spina bifida clinic, the social worker sat in with us on the consultation with the neurologist. She had already spoken to her and at last we were being listened too. Faith had changed so much since our last visit and she saw first hand how sick she was. The neurologist saw the hot and cold sweating on different sides of the body, the sweating on one side of the body, the pain and the distress she was in. She saw it at last and she acted.

The neurologist got a second opinion from another consultant and then hastily called the neurosurgeons. We also saw a consultant paediatrician who specialized in spina bifida and he called the neurosurgeon too. The doctors at last understood. It went on for a few hours, it felt like a whirlwind. We saw doctor after doctor and explained what was going on. The neurosurgeons decided that posterior fossa decompression surgery and shunt the syrinx was the way to go. It was explained how this operation would work and what it would do. Frightening, but what other way forward was there, there was only one. The surgery was scheduled for a couple weeks into February 2011. At first the doctors wanted Faith to stay in hospital until surgery but they thought we have been living with this for a long time now and it might not be best for the family. Faith might catch some other bug in the hospital so decided to discharge her.

A week before the surgery we had to bring Faith in for another MRI so the neurosurgeons could see where the blood vessels were and be as prepared as possible for the surgery. Faith was already scheduled for a CT scan as the plastic surgeons were looking at the possibility of whether it would be beneficial for Faith to have a helmet to reshape her head. We were very unsure about this as we had to be careful of pressure spots and her shunt. In consultation with the neurosurgeons we later decided that her head shape had formed nicely and it was a waste of time but at this point we were still seeing where the road led. Back to the MRI/CT scan, we had to report to the day surgery unit and sit in a crowded waiting room until they were ready for Faith. She had to have another general anesthetic and because an MRI had been added we were bumped to the bottom of the list. She was so hungry and we waited and waited. This time there was no power outages and the MRI and CT were completed as quickly as possible. We were taken back to the day surgery unit where we had to spend a few hours waiting to see if Faith had any reaction to the anesthetic. She was fine.

With the surgery the following week we started to plan, we would have to be in Brisbane at least a week. We had to organise food and accommodation. We had to be at the hospital the day before and we were desperately hoping that this surgery would give Faith a better life. It was hard waiting for another week and we really wished it wasn't so far away. A week felt such a long way off. But the days did pass and the day to go back to Brisbane came. We were feeling so anxious and stressed, we were sharp with each other and struggling. The trip there took longer than usual as it was raining again. But we eventually arrived.

We lined up at admissions and booked in.  The staff were friendly and talked to Faith. We headed back to the well walked corridors of the babies ward and to our surprise they had no beds. Yes, we were expected but no where for us to go. This threw us and we were asked to wait in the parents lounge. It was hard not to jump to conclusions thinking what does this mean, no surgery, no bed, what are we going to do. The neurosurgeons had not forgotten us and we had a visit from the registrar and fellow who we had never met before. We were very impressed by this new registrar and fellow. They explained the procedure. Faith was to have a posterior fossa decompression. The goal of this procedure is to create more room around the malformation and restore the flow of spinal fluid. They said that this procedure was rarely done done at this hospital on someone so tiny. The neurosurgeons had to order a special instrument from the Melbourne children's hospital to assist them. We also went through the risks of the surgery. Faith would have to go to the Paediatric Intensive Care (PICU) afterwards and would have to keep her head very still and this was a very dedicate time after the operation. She might be there for a few days but would take it a step at a time. Brain overload! Then the nurse came in. Faith's bed was ready. Here we go!

Faith had a lovely position next to the window and I had a window bed to sleep on. There were two other babies in the room. A new born near the door and a little baby boy opposite us, who was alone. Faith had to have bloods taken and get a drip put in her hand. She is such a challenge to get a drip into as she has had so many. This happened later that night. This was really going to happen. They were checking everything including blood type, white cells all the usual tests. The surgery was scheduled for pretty much first thing in the morning. The surgery schedule had be cleared as they were not sure how long it would take. It all just sounds like a bad dream, I am now meant to wake up!

MRI

We drove to Brisbane for the MRI and it wasn't a fun trip, it was pouring rain and the rivers and creeks were raising but we had to get through and luckily we made it (it also happened to be the worst floods Brisbane had experienced). We rang to confirm our appointment and I think they were about to cancel it until we told them we drove all this way. We later found out we were the only appointment that day, the remainder got rescheduled due to the floods. We got there early as usual. Faith had to be put under a general anesthetic and the scan was going to take a couple of hours at least. She was going to be taken to the babies ward afterwards to ensure she recovered ok. If everything went ok we were free to take her back to our hotel. We had to stay nearby for one night as a precaution. Half way through the MRI the power went out as the flood waters were rising. We panicked as Faith was inside the MRI machine. A nurse came out and said that she is fine, they have a generator but the MRI machine did go off line and they would have to reboot it so we had to wait even longer. Faith was under an anesthetic for a lot longer than should have been. She came out and was so hungry. We took her upstairs to the babies ward and gave her a big feed. With no problems from the anesthetic we returned to our hotel.

Later that day we received a telephone call from a rather concerned neurosurgeon. He explained that he was the on call registrar and that he had been asked to review the MRI report as they had found an extremely large syrinx. A syrinx? We didn't even know what that was. It is a abnormal fluid-filled space found within the spinal cord. It is often found in children with spina bifida myelomeningocele. This is what Faith has.  We were not sure what this meant. He said that our neurosurgeon wasn't on call so he would talk to the one that was and would call back early the next morning. He said that if an adult had a syrinx that big then they would operate in the not to distance future. Was this the answer that we needed? It this why Faith was having so much trouble. We didn't know. We just had to wait.

The next morning dragged on until we got a call from the neurosurgeon registrar and he said that we would need to come back and see our own consultant neurosurgeon. He said that a syrinx can either symptomatic or asymptomatic. We were thinking, well it's obvious that it is symptomatic. Faith was starting to go numb in her legs and didn't respond anymore to touch. With the floods continuing to rise we couldn't stay in Brisbane any longer and with the appointment with our own neurosurgeon a little way away, we went home. Life at home wasn't easy, the mornings dragged out with Faith so chronically sick and not much being done. We pushed for appointments to be brought forward but didn't have much success.

 After some research we believed the syrinx to be the cause of this pain and it appeared the arnold chiari ii malformation was also symptomatic and it needed to be addressed. We just couldn't make the doctors believe it. We were told we just had to wait for our appointments. We'd spend every day with a very sick baby and we struggled with knowing what to do. Our hearts were heavy and anxious with worry. The days all felt dark. There was no rest for any of us. Faith had been up most of the night in distress and with focal seizures continuing we gave her some midazolam. We had never tried this before and her breathing slowed and she was asleep. We raced her as fast as we could to the local hospital and we were taken straight in. Of course, this woke her up and after being monitored for several hours she was fine. Faith has a strange temperature control as well, so half her body would feel ice cold and the other would be hot. Because of that taking her temperature was a challenge. When they did her temperature it was high and so on that they admitted her. We protested and explained this does happen with her. At last, our own paediatrician agreed to let us take her home but leave her admitted and come back if there are any problems.

That night she seemed ok but the next morning again she had a temperature on top of the morning seizures, sweating, pulling up legs and jerking them. Our local hospital promised to talk to the neurologists but never did so we left very early in the morning and presented to the Brisbane hospital. Faith was admitted straight away and it turned out that in the previous 24hours she had picked up a gastro bug. So we were isolated as well. We spoke to the neurologists and they said the best thing is for them to film her so they could see what is happening with the seizures. This also gave us a chance to get the neurosurgeons to come and talk to us about the MRI report as our appointment was still a couple of weeks off. We spoke with the consultant neurosurgeon and he said, yes it was a syrinx and it was one of the largest he has seen and there was a lot of built up pressure in the brain from the arnold chiari ii malformation but unless symptomatic there was nothing they would do at this stage. We couldn't believe he was serious in what he was saying, can't you see our little baby and how she is suffering but he was putting that down to the neurologists to deal with. He said that if the neurologist said that Faith was symptomatic with the syrinx and arnold chiari ii then they would act but not until then.

The seizures were filmed and they did see what we were talking about and they were not seizures, wow, we couldn't believe it, what were we going to? Astonished. They said of course it wasn't normal but it wasn't seizures. If this wasn't seizure activity what is causing Faith's foot to twitch and the sweating, the hot and cold temperature, the vomiting, the pulling up of the legs and the jerking movement. What was it then?

Home!

With such excitement we are home! Our house had been decorated with welcome home signs and flowers. It was 9 weeks since I have been home and it feels so good, though strange. I brought Faith straight upstairs and showed her the house and her room, took her onto the deck pointing at this and that. So good to be home. Our Faith was with us at last. Over the next few days and nights we felt Faith wasn't feeding well and she is such an unsettled baby. She sweats a lot and pulls her legs up. We just assume this is the way it is. My husband had to go back to work the next day so it was just Faith and I. It was nice though I was exhausted. Being out of the hospital environment was fantastic. Friends and family visited and brought presents for us and we also got yummy meals and we felt loved and cared for. We managed to get a baby health nurse to come and visit and weigh Faith and talk to the nurse about feeding issues. She said that there is a feeding and sleep clinic we could come too and managed to get in the following week. The first few days at home were busy, we had the wound nurse coming most days. I would change the dressing but she would just check it and provide the supplies we needed. It was looking so much better. The spina bifida site was healed completely now, it was just where the flap of skin had been moved that needed to heal.

A few days later we went back to Brisbane to see the plastic surgeons and Faith was upset most of the way and cried a lot. The plastic surgeons were happy that the wound on her back was healing slowly but well. We were told just to keep on going with what we were doing. It was a long day but we successfully made it through and were very happy to get home. Faith is our first baby so lack of sleep is something we both expected but she was always restless and cried so much. We got go to the sleep and feed clinic and discovered that Faith had a uncoordinated suck and swallow so even though she looked like she was feeding well, she wasn't getting much milk. We tried bottles and holding her cheeks together to give her some support and she sucked like crazy. Our baby was hungry! I felt terrible, I was trying so hard. Breast feeding was over and expressing again begun and bottle feeding was the way to go. Whatever is best for Faith. Expressing, bottle feeding and caring for a baby. Crazy times.

One day when we were on a play date and I was holding Faith, the little boy we were visiting said, Faith has a lemon shaped head doesn't she and I said, we all have different shaped heads, yours is like an apple. We are all unique. We celebrated Faith's dedication with our church family in December and had a lovely BBQ lunch afterwards. It was really special for our friends and family to see Faith and how she was doing. Faith wore the same little white dress with the intricate details as I wore at my dedication, that was special. It was nice to have these little bright spots in our calender with something good. As most days were not good at this point. Faith clings to me and doesn't like to be held by many others but she loves to watch what is going on. She was also getting quite picky on who was to give her her bottle, it was only my husband and I.

Faith seemed like she was in pain as she pulled her legs up a lot, it was hard to figure out what was going on. We were also a bit concerned as Faith took so long to feed, we would sit there for sometimes an hour feeding her. The uncoordinated suck and swallow seem to cause her problems. At other times she would drink the milk really fast and sometimes she would vomit it up. I wish that the hospital had picked this up so we could have figured it out before we left. Time passed and we had horrid nights and the occasional good nights. We didn't go out much as Faith never seemed settled. By December, life still hadn't improved and we started noticing a twitching in her hand and particularly her thumb and the sweating was still profuse, all over her body. Infant's friend syrup seemed to help a little with any wind pain but not much. We saw our other friends with the same age babies not having so much trouble and wandered what was going on with Faith.

On this particular day that we noticed the twitching, we contacted our local pediatrician and he suggested that we should do some tests to see what was going on. A EEG was conducted and it came back clear. An ultrasound of Faith's head was done to check if the shunt was working and it was fine. But still no success. Faith was admitted to the local hospital for observation. The doctor decided to put her on Tegretol and see if that helped. Amazingly it did and we saw a marked improvement in Faith's health. But what was causing these focal seizures and what other investigations were going to be done. We ended up back in hospital a short time later with seizure activity. It generally happened in the morning, Faith would get so distressed and scream and pull her legs up in such intense pain and then her foot would start twitching and she was covered in sweat. All we could do was hold her close and do our best to comfort her. The local hospital had no idea what was going on and was not much help. I remember one nurse saying, just give her a bottle and it will better, but a bottle wouldn't help with a focal seizure. The paediatrician called the neurologist in Brisbane and they put her on more medication, Keppra this time. It didn't seem to help and we thought we need to get to the source of this problem not keep giving her more medication.

We had a trip to the spina bifida clinic in Brisbane and saw a urologist who said that Faith was retaining some wee in her bladder but didn't think we should catheterize just yet. We were keen to see the neurologist as Faith still had these terrible focal seizures in the early morning. It was decided a MRI would be booked for January to look and see if the Arnold Chiari ii malformation was causing this problem. In the mean time we just have to make do. We were not sure what was going on but Faith was not enjoying life she was either vomiting or in such distress nothing would help. The orthopaedic surgeon saw movement in her legs so that was encouraging.

Christmas week was the best Faith had ever been and maybe we were turning a corner. We just wanted a quiet time as we wanted to enjoy the peace but it wasn't to last. New Year's Eve she got worse, this foot twitching and pain or whatever it was got worse in a different way with a new intensity and we knew it had to be something serious.

Is it time for home?

I figured the best way forward was to keep myself to a routine and this structure would help me manage my feelings of loneliness. I headed to the dining room to cook my dinner and I noticed the ladies who were alone and the couple/families together. One family was sharing ice cream with another little boy and I thought how nice to see them sharing. I longed for my best friend's company. I had a quick dinner and headed back to my room. I set my alarm to wake so I could express milk overnight and went fast off to sleep. My routine was to get up really early, have an early breakfast and make it to the NICU for the change of shift so I was there for handover. This is what I did each day. I didn't think that I could make it by myself but I did and it wasn't long until the weekend approached and my husband would return. We spent the weekend together visiting Faith and enjoying having each others company again. It was nice to have someone to share with and talk to. But again the time came when hubby drove off in the distance and I was alone again. Faith was given this big homemade pinkish cat and it was so cute. It folded out into a pillow. I sat it on my bed and it made me feel like I had a little bit of home with me.

The neurosurgeons were happy with Faith's progress and were happy for Faith to go home but the wound was what was now keeping us in the NICU. There was talk of sending Faith to the Children's hospital which would not only mean out of NICU but I would be able to stay with her 24hours a day and care for her. At first I was apprehensive as I would be leaving my safe zone and starting over somewhere else. But the exciting part was I would be able to care for Faith. I could see this as a positive. The babies ward didn't have any available beds so we would just have to wait. The week past and my husband was to return. We also got the news that the babies ward had a bed for Faith and we were being transferred. Wow, how exciting. So just as my husband arrived we were moving to the children's hospital.

It was so different, just like a normal hospital, not like the mother's hospital at all. I suddenly was thrust into the full time care of Faith, for the first time.  She conveniently pulled out her NG tube, so I would be now breast feeding. Wow, what a change. This also brought the challenge that Faith was expected to sleep on her back but she had never done this and I wondered how she would settle. It wasn't possible anyway, as the wound was still serious but it was strange how the nurses just expected her too. The VAC machine was still on and the majority of the nurses had no idea how to work it, it appeared it was up to me. My first night there was a disaster, Faith barely settled and I had had no sleep and by the next morning I was sick, I had caught a cold.

Faith was having bottles when I was not there so I thought it might be best though I felt so much guilt not to stay that next night. I didn't want to give the cold to Faith or any other babies. My husband said that it was a good idea as I needed to care for myself during this time. I felt horrible and felt that they don't know her and how are they going to look after her. The next day, I anxiously ran over there in the morning and was feeling better. As we were past our maximum stay time in our accommodation we had to move out so my husband stayed and relocated our things to another temporary room until other accommodation could be found.  When I arrived, they were using the wrong teat for Faith's bottle and they had lifted the VAC machine above her to sit on the table, it was alarming. The VAC machine is always meant to be kept below the patient. I asked how long it had been alarming for and the nurse said when she had started her shift. They didn't know what to do with it. If it is alarming it needs to be fixed and if it cannot be fixed, it has to be taken off the patient as it can do damage when it isn't working. I was so annoyed. They should have called the plastic surgeons but as it was a weekend they didn't. The plastic surgeons came in unexpectedly and fiddled with it and it worked again but only for a short while and it alarmed again. Oh, so frustrating. One of the nurses realised I knew what I was talking about and so we took the VAC dressing off. I said if the dressing is off and it is just being changed daily this is something that I can do at home and there is no need to be in hospital. She agreed with me and contacted the plastic surgeons. It was the weekend so to get discharged on the weekend is a challenge. I managed to get Faith weekend leave, for us to return each day and we could stay at our accommodation the rest of the time. Our accommodation situation was a mess, it was meant to have been re booked but an error occurred and we had to keep shifting rooms which was tedious. The staff couldn't care and didn't offer a hand.

The exciting thing was we were taking Faith for the weekend, our first night alone with her and no nurses. It felt so strange. We carried our little bundle across to our room and settled in. She immediately had a sleep. So beautiful seeing her lying there. My Aunt and Uncle arrived with a porta cot, this was exciting. Night time came and Faith was so distressed she just wouldn't go to sleep. She wouldn't sleep, she didn't seem to be feeding properly, minutes turned into sleepless hours. We had no idea what to do. We couldn't go back to the hospital as there was no lactation nurses on during the night to provide advice. So we thought the best idea might be to try a bottle, maybe she was confused. So we gave her a bottle and off to sleep she went. Since we had been moved from the mother's hospital to the children's we didn't have that chance for Faith and I to be together to make sure she was feeding ok. So Sunday night came and it was slightly better.

We went back to the hospital on the Monday and got the all clear from the doctors. The plastic surgeons wanted us to come back the following Friday for a wound check. It had also be arranged that we would see a wound nurse back home. But this was true? After 9weeks we were going home! Faith was 6weeks old and we were heading home. It is true, yes, it is. This was the moment we had been waiting for. Praise God! It was late in the evening when we finally got the car packed and the all clear from the hospital but we were off. Homeward bound!

Shunt Malfunction

Over the next few days, when we telephoned overnight to check on Faith, we were told she was restless and confused with night and day. There were mornings we went in and the doctor's were not happy with her progress and days that were ok. Some days I stood at the doors of her room and was scared to go in because I didn't know what I would find. Sometimes it would be that Faith's condition was stable and other days I would just burst into tears as something had gone wrong. One of the days that stood out was the first Saturday, we were out at the shops buying some food. We got a call from a well spoken neurosurgeon, who explained that over the last few hours Faith's head size had increased a substantial amount. They were going to have to take her back to surgery as the neurosurgeon said it was a shunt malfunction. It had only just been put in, surely not this soon. I found this hard to take in, so I gave the phone over to my husband for it to be explained to him. This was not good. Faith's shunt valve was at the wrong pressure so they had to make an adjustment to it. Thankfully, the surgery was a success and we could come and be with her again.

The next day as we walked down the corridor of the hospital to see Faith I heard this cry and I said to hubby, that is Faith and I started walking faster and faster. When we arrived it was Faith crying and they had taken her breathing tube out so this had to be a good thing. I just had this instinct that it was my little one crying. It was an amazing feeling. The same day unfortunately, Faith had a seizure that the doctors were extremely worried about and had to relieve pressure in Faith's head by removing fluid. What an intense day but it wasn't over yet. We were quite shocked as when we turned up to see Faith they were changing her wound dressing where the flap of skin was moved. The wound had broken down extensively, it was a triangle shape and it had turned into a cavern in her back. We asked what was going on and we wanted to speak to the doctor about it, as we were not told of the seriousness of the situation. If the wound deteriorated too much more it could progress to the spina bifida site and leak cerebral spinal fluid (CSF) and it would mean the shunt would need to be replaced. This was such a shock. I have never seen anything like it.

We spoke to the plastic surgeon, who we were not impressed with, and they were going to keep a close eye on it. This happens apparently. A couple of times a year the doctors see this in the hospital, but it didn't make us feel any better. We would have to keep a close watch on the situation. I think it was at this point we had to start taking more note of what was being done, medications given and things like that. It is so much take in, particularly only 7 days after the birth of our first baby.

Over the next several weeks, there were days the doctors didn't know what was going to happen. The same routine every day. Back to our accommodation and back to the hospital. This was our world and we didn't know much that was going on outside of it. We got to know nurses, doctors, cleaners and many of the staff very well. I even had a health scare in that I had chronic pain in my back and was admitted and had to have an MRI to check there was no damage done from the spinal tap, but thankfully it was fine. I think it was all the walking and activity, not enough rest but there was nothing I could do about that.

Family kindly brought us meals and encouraged us to keep praying and keep going as we will get there. I think what I found strange as my life at home continued on without me. Time was passing but I felt like I was just treading water. There were so many stresses at this time. Sadly, there were some family that didn't understand why they couldn't come and visit. They put a lot of pressure and guilt on us. I understand that it must have been hard for those that didn't understand the seriousness of our situation but we were so exhausted and concerned about faith. It was hard to find words to explain why they must just wait. There was going to be plenty of time in the future to see Faith. But I think some people forgot to look at the situation from our point of view and how we felt and what we were going through. We were doing what was best for Faith and what she needed and if that offended others then there was nothing we could do. We tried so hard to please everybody but it isn't possible. Some days were bleak and I would sit beside Faith and tell her about our life at home, about our garden, our pets and friends. We would talk about her life soon to be at home and the beautiful things we could all do together as a family.

I celebrated my 30th birthday at the hospital. I had hoped that we would have been home by then. I also hoped that I could just ignore my birthday as I didn't feel like celebrating. By my birthday coming it made it very real how much time had passed since I first arrived pregnant. But to my surprise I had my mum, dad, aunt, uncle and cousin arrive and spoil me with gifts. My friends back home had sent cards, letters and gifts to remind me of what I had back home. I was very grateful, I even received a bunch of flowers. It was lovely to celebrate this day with family I hadn't seen in a while. But it was still hard as I was sad and I wanted to be with Faith. The night we visited on my birthday we had a mean nurse who snatched Faith away from us the moment she started to cry. We were not even given a chance to settle her. It seemed we had no control over anything. As time passed we learnt to say no and not be put in that position. We did spend a lot of each day sitting by her side but it wasn't the same as having her all to ourselves away from the nurses. We had some amazing nurses who gave us a lot of control of her care and we loved the days we had them as it made it so much easier and we could enjoy her more.

The wound on Faith's back looked terrible and they decided to put a VAC dressing on it to promote healing. A VAC (vacuum assisted closure) dressing is a device that consists of a dressing which is fitted with a tube and attached to the wound VAC (a machine). Negative pressure wound therapy is most commonly used with chronic wounds which are not responding to other forms of treatment, and sometimes with surgical wounds which have reopened. It was a delicate wound as if the VAC dressing pulled too much fluid out it could draw the cerebral spinal fluid (CSF) out and then we would have to start again with the shunt having to be replaced. I learned as much as I could about this VAC dressing machine as it wasn't commonly used in the NICU and most nurses were not trained in the use of it. Alot of nurses were not trained in the care and maintenance of a wound this serious. When the wound nurse came every few days I would question her and get her to show me all about this machine and also care of the wound. At first, the wound got slightly worse and we were extremely worried and they were talking of taking Faith back to surgery. A plastic surgeon came every day but extremely early so I struggled to catch them, but this particular day I was determined so I got up early and made my way to see Faith. I got there just before this medium height, snobbish plastic surgeon arrived. When he got there and he was examining the wound; I was asking him how wounds like this heal and he said with a serious face its magic. I said that's not true how do they heal? He then made a joke with the nurse saying it just heals like magic and smart remark to the other doctor. I was completely disgusted by his response before I could say anything he was gone. I still didn't have my answer. I later asked the wound nurse and wounds heal from the bottom of the wound upwards. This was the day I realised no more, I don't deserved to be treated like this and I spoke to the wound nurse about this plastic surgeon. Within a few days the NICU was buzzing about a doctor who told a parent that wounds heal by magic, he appeared shortly afterwards but with the consultant and made an awkward apology. I would like to hope he learned from his mistake but I don't think he did. From then on he always treated me with much more respect and answered all my questions.

One night my husband said that he had no more leave and he had to go home. I knew it was coming but still hoped it wouldn't. I had hoped we would go home before this day arrived. We were a team and did this together. Even though Faith seemed to be progressing ok, it was a few steps forward and a few back. So, the day came and my love drove off into the distance and I was left at the window alone and wondering how I was going to make it through each day and manage it by myself. I was soon to find out.

Our first days together

Day 2 - The social worker was right, I did crash and hard. If this had been the way I had imagined it, friends and family would be visiting and admiring the baby. Instead, neurosurgeons came to say that the surgery would be done in the morning and they would come and speak to us as soon as possible afterwards. So as fast as I could manage we headed to NICU and sat with Faith. We couldn't hold her as she still had a breathing tube but we could hold her hand and talk to her. The time had come for Faith to be taken to the children's hospital for surgery, I shed some tears as she went. It was all feeling like a dream, surely this isn't happening. I headed back to my room where I was told that the next morning I was to be discharged. This was to much, I could barely walk and it wasn't like I was going home. I would have to walk quite a distance back and forward to the hospital to see Faith. The social worker intervened and I was able to stay another night. I think what I found hard was I under the impression I would stay nearly a week which would mean I would be nearer to Faith.  Also to be able to recover more quickly but that wasn't the plan. I was sore, tired and life felt so strange. I was expressing milk with a picture of my baby and 24hours later still no cuddle.

There were some nice surprises my mum and dad brought me delightful flowers and a it's a girl balloon and my husband's work sent beautiful flowers and a cuddly pink teddy bear. It brightened the room and made it a little more cheery.I received encouraging and congratulatory texts from friends and family.

That night the neurosurgeon said that the surgery went well and they sealed the spina bifida and the plastic surgeons shifted a flap of skin to cover the hole. Apparently this was easier than a skin graft. I trusted their judgement as I didn't know about these things at this point. We were then able to go and visit Faith and sit with her a while. As she was so sick and attached to tubes, machines, and oxygen we were not able to do any care of her just sit there and watch another care for our baby.

Day 3 - This day brought unexpected challenges, Faith's head circumference was getting bigger and this meant that the neurosurgeon's had to take her back to surgery to put in a shunt. She had only been to surgery the day before and back again she went. I remember signing the consent forms and feeling dreadful. The surgery went well and the doctor's were happy. I remembered he said we will do everything possible to have your baby back with you soon. We understand this is hard. During the night, I had some pain so I had some pain killers so I was really drowsy and I awoke with a start and the nurse was wheeling in a baby! She was saying I am sorry I had no luck trying to settle him. And I said, Faith? But then realising the nurse said he, I said you have the wrong room and she apologised. For a second I thought it was Faith (knowing deep down it couldn't be, but still hoping). Then I went back to sleep with teary eyes and a heavy heart.

I was discharged and wandered down to see Faith and the nurse said, would you like a cuddle and I said yes yes please. What excitement! But my other half wasn't there and I desperately wanted him to be. I couldn't wait and the nurse reclined me in the chair and placed Faith on her tummy (as she wasn't allowed on her back) I had to be so careful of her back and her head. Wow, it was wonderful. I could feel her heart beat and she just lay there and went to sleep.  The nurse took photos and I was so proud. That night when hubby came in he also got to have snuggle with faith and it was a wonderful sight. Surely, we are getting closer to going home. 

A Poem Shared - Welcome to Holland

How is the best way to describe my life now and how it might have been. I want to share this poem with you that I found. 

Welcome to Holland

By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. 

It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. 

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And some of that pain will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland!

A New Life

'For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are beautiful, I know that full well'.

Psalm 139:13-14

I stood and looked through the sliding doors. My heart leaped and I felt the baby move. Still marveling at a life growing inside me. In the next few hours I will have a baby girl or boy. A new life! Packed and ready we knocked on the hospital admittance doors and a kindly nurse came and let us in. She showed us to a recliner to wait. Let the admitting process begin! I was measured for compression stockings, weighed and met with the anesthetist. I was to have a spinal tap, the name in itself sounded scary. This was really happening. I awkwardly changed into fashionable surgical gown and stockings with the help of the nurse (otherwise I might have lost my balance). I was feeling huge. The outfit was just lovely (not) and we were shown to the operating theater waiting area. My husband was shown to a place where he could get changed into his surgical outfit too. Very attractive (I think he looked rather cute in his scrubs). We sat in the waiting area. Waiting, waiting and then another couple sat down. I remember seeing the lady holding a little hat for her soon to be baby. I then thought, I didn't bring one, I didn't know! Why didn't I know!

Just when I least expected it, my name was called and in we went. I was quickly introduced to doctors, nurses and had to get into a position for the spinal tap to be performed. It was all happening so quickly and it was beginning. I had to lay down on the bed while the spinal tap was taking effect. It was the strangest sensation. The numbness slowly moving up my legs right up to my arms and chest. The doctors were already starting to organise the operation. I then had the worst nausea. I mentioned it and it was gone. So quick. What an effective medication. Both my arms were strapped down, one for blood pressure and the other for a reason I can't remember. I felt quite trapped with no feeling in my lower half and my arms strapped down. This was really going to happen. I met the team who were to look after the baby when he/she was born. I begged for the opportunity to hold the baby soon after his/her arrival but they said they didn't know but if it was possible they would let me. I so desperately wanted to hold my little one.

It had begun and within a few seconds, they were lifting up a baby for me to see and it was...drum roll... A GIRL...I had always felt that it was a girl. She had jumped and kicked when we watched girly TV and I just knew but I didn't what to say in case I was wrong. I read the old myth about the baby's heart beat being high if it was a girl and I was right. My husband thought the same too. A GIRL. Praise God!

She couldn't breathe on her own. She had to have a tube down her throat to help her breathe. My husband went to be with our little one and hold her hand. She grasped his finger. It would be many years until she could grasp a finger like that again. 

We named her Faith because it was faith that sustained us through my pregnancy and faith that will keep us going too. I wish I could have been there too. They put a little hat on her head too which I never saw again. I just have a photo of it. The anesthetist's assistant was madly taking pictures for us so we would be able to remember the day. Those photos are a great treasure, with such mixed emotions. 

The next moments were a bit of a blur. They wrapped our little one in a cling wrap material and she was taken away to the neonatal intensive care unit. I was sown up and taken to recovery. Considering what I had just been through I felt pretty good. All I wanted to do was to go and see little Faith. But I had to wait a few hours. 

At last, I was taken in my bed to see Faith, I leaned over and held her hand. I wanted to cry. I whispered some kind words to her and that I loved her. I was taken away from her again. 

It is an incredible feeling that this little person that I just met that came from me, and that I already have such a great love for her. Faith didn't have her mum and I wanted to be there and I couldn't. My heart ached. I was a mum of several hours and I hadn't held my baby or even be able to do the simplest thing of feeding her, holding her. I didn't put her first nappy on or her first hat. I wasn't the first person she saw. She saw a stranger. Oh, how I longed to go to NICU. I was taken up to my room. I was pleased I didn't have to share with anyone I didn't feel like explaining why my little girl wasn't with me.

I felt so good after the surgery. I was surprised. I was brought a meal and didn't realise how hungry I was. I received a visit from the social worker who said that many ladies feel really good the first day. She said I should be prepared for day two as I would probably crash pretty hard. I took that in but thought no I will be fine. My husband went and saw our little baby and sat with her for a while. When he returned the staff in NICU had printed out a photo of our little just for me. She was beautiful. She still had a breathing tube but I didn't see it, she was perfect to me. We also had a visit from the neurosurgeon to say that the following day she would have surgery to close her hole in her back (spina bifida). They said that at this stage they didn't need to operate for hydrocephalus as it wasn't currently progressing. They would just monitor Faith's head circumference.

I decided to give Faith the best start I could, I would express milk. At least this is something I could do. I asked the nurses about this and how I was to start and they said, just rest for now, you can get to it later. I wasn't sure I agreed, but I did. My husband was staying the night with me which helped and by then I was expressing every few hours. The exciting news of the night was that my nurse said she thought I could go and visit our little girl. I moved ever so slow, a little painful and hopped into a wheel chair. My other half pushed me to NICU. This was our baby, I found it hard to believe. So beautiful! She was doing as well as could be expected. She had a tube down her throat and was being feed by a tube. A very emotional and brain numbing time!

Back up in my room and with a little pain we settled down for the night. 

Tomorrow our little Faith would face surgery.

4 Weeks and Counting

I didn't know what the plan was for the arrival of our little one. It hadn't been discussed, all that was planned was for me to come to Brisbane and wait. Wait!

We arrived a warm Sunday afternoon. Unfortunately, our first contact with our accommodation host was extremely negative and we continued to have problems until the day we left which was sad. More stress we didn't need.  First thing Monday I met with a social worker and explained my concerns that I didn't have an appointment with a doctor for another two weeks and my c-section hadn't even been booked. I felt like I had been sentenced here and no end date to go home.

I missed my best friend (my husband), and thought how we should be experiencing the last weeks of this together. I just wished somehow it could be different. But it wasn't and I had to deal with it though difficult. I felt alone and I couldn't see how it could be eased. My mum was wonderful trying to cheer me up and even tried to smuggle a glass of milk into our "food free" rooms for my horrible and intense heart burn but she got caught. She shouldn't have had to endure the ridicule and criticism that host of the accommodation placed on her. All for her trying to ease her pregnant daughter's heart burn and so she did not have to go down the two flights of stairs to get it. Poor mum.  

I had a amazing social worker who actually spoke to the doctor and got a date for my c-section. Yay, a birthday has been picked for our baby! That at least gave me a date and I could organise for my husband to come and stay. He was planning to come a week before so we could have some time together and I couldn't wait. He also came each weekend and my mum stayed during the week so I wasn't alone and I greatly appreciated that.

My first scan after my arrival was disastrous. I had a doctor conducting the scan and he had a student doctor with him and they were dreadful. They discussed the conditions of spina bifida, arnold chiari and hydrocephalus which was fine. But, they went beyond that and started to talk about after the birth and the way he thought the baby was going to be as he/she grew up. This was not right, he didn't know the future and yes my baby did have have serious conditions but he can't speculate. I told him that and had a rather heated discussion about him presuming too much. I was a heavily pregnant woman and he was discussing my baby in a way he had no authority. I came out nearly in tears and went straight to the case worker nurse and told her and she was very sympathetic. She said that this doctor had that tendency and I wasn't the only woman he had treated this way. That shook me for the rest of the day.

I didn't have much to do so many days we walked to Southbank and sat in Cafe's to fill in time. It wasn't really a happy time just sitting around in a one bedroom room with a pull out bed pushed against the wall. But the days were ticking by and the day that my husband would arrive to stay for the arrival of our bub was so close. I couldn't wait. I had all these plans of fun activities we could do for that last week.

My mum had headed home and I was watching anxiously out the window for our car and there it was, I ran as fast as my little pregnant legs could carry and we ran into each others arms and embraced. My love was here at last. At last it was only seven days until the planned birth and we were so excited. We were taken to the Neonatal Intensive Care Unit  so we could see where our little one would be coming pretty much straight after the birth. They said that as soon as I would leave recovery they would bring me by to see our baby. It was very clean and such tiny little babies everywhere, it was a high security area so all the babies were safe. In my mind I had the ideal situation in my head that we wouldn't be here long and that we head home not too long after the arrival of bubs. I tried not to think to much about it but concentrate on getting through the next few days.

My other half and I walked the by the river and ate some yummy meals, checked out the maritime museum but at night it was an all too true reality that we were not going home soon.

The night before the birth I was apprehensive, excited and nervous.  I had this horrible fear that I was going to die. I don't know why but I guess having major surgery and after the doctor went through the possible things that could go wrong I was a little scared. I didn't tell anyone how I felt as I thought I was being silly. The morning of the scheduled c-section, I showered, packed and I was fasting so my husband went to the kitchen and got himself some breakfast. I was too nervous to be hungry. We were ready quite early and decided to walk to the Mother's and just wait.

So off we went to begin the next phase of our journey...

Finding Normality

At first I didn't really want to see anyone, I just wanted to be left alone. I needed to get my head around what we were facing. Friends and family prayed and some visited but for a while we just stayed away. It was easier this way for now, anyway. Minutes, turned into hours and hours into days and slowly my joy in my pregnancy started to return. The maternity clothes got pulled back out and so did the magazines and I started to plan the baby's bedroom. I guess the biggest aspect I tried not to think about was that four weeks before my due date I was going to have to relocate to Brisbane which meant staying at Ronald McDonald House. For now, I just pushed it to the back of mind, anyway it was still months away.

I returned to work and began to do most of the things I used to and in my mind it was going to be ok. My visits to the local hospital were not pleasant ones, I was consistently told that my baby had spina bifida and arnold chiari because I didn't do this and that and it hit me very hard, all these myths were told to me, doctors were the worst. I would concentrate on that each visit I would hear the baby's heart beat and that was always a comfort. It was hard to ignore the comments but I had to choose my fights for the baby's sake and my own piece of mind. I did cry and feel overwhelmed every time I went to the hospital, I generally went with a sense of dread. I had some nice midwives but I always had to go to the doctor's clinic unfortunately. 

Our trips to Brisbane included a routine scan and a meeting with the doctor. I always found each ultrasound scary as I didn't know what they might find. In the early days there was no sign of hydrocephalus so that was encouraging. I got bigger and bigger and I loved feeling the baby move and kick. It gave me such delight. A couple of my friends were pregnant so it was great sharing our pregnancy journey together even though mine was sightly different.

I didn't do much research into spina bifida and arnold chiari malformation as I knew what I needed to know for now. The way in which our family and friends dealt with the news was very different. Most of them just wanted to be there to support us in any way possible. Others wanted to know what the outlook for our soon to be little one was. But how are we to know, every situation is different and the body responds differently too. I think that is what I struggled with most was those sort of questions. To me why look to what may be but look at now and the positives for now and deal with the future when it comes. I never minded answering questions about spina bifida but asking specific questions relating to the unknown of precious baby, I didn't see any sense in it. I think my husband dealt really well with the hard questions, he shielded me from it and at that point it was what I needed.

Now to the fun part, my mum organised a baby shower. As we didn't want to know whether we were having a boy or girl (we couldn't find out anyway as when our scans were done the little one kept turning away) we went for all the pastel colours. We had it at our house and this certainly brought so much fun to the baby planning and future. So many people came we had a full house. It was so much fun, we had games, food and everyone was so generous. The little bub got so many practical, fun and beautiful presents. By the way, so did I. I was spoilt We celebrated and it was such a joy. My husband and I painted the nursery and got furniture, all the little clothes washed, pressed and folded awaiting the arrival of bubs.

The day that was to come that I dreaded was the day I would leave my family and friends behind including my husband to relocate to Brisbane to await the arrival of our baby. This was so hard, so many tears, I felt this isn't the way it's meant to be. I wanted to be nesting at home. It was four weeks before my due date and suddenly my new found normality was gone again, a long time to return.

And to Brisbane I went...

Information Overload

Our first antenatal visit we got introduced to our case worker who would organise everything relating to my pregnancy. She was a happy and bright person. We had normal first antenatal meeting with the midwife, family history, type of birth, it was quite fun and I felt normal and was treated so. I also got the mother to be bag of goodies which was exciting. Then the scary bit came, another ultrasound, this was our first one at the Mother's hospital and the environment was quite different. It was quite a large waiting room full of pregnant women and children reading magazines and snacking, a fun past time for pregnant women.

I was called in and I must admit though the lady conducting the ultrasound was friendly she happened to be a student (I found out later) and after the ultrasound began she disappeared for a while making me extremely anxious and close to tears. She would come back and say I just need another opinion and immediately I was taken back to the first ultrasound I had in our home town. Fear was rapidly engulfing me and my other half is trying to calm me. Eventually, she came back in with a man who started to go through that the baby has spina bifida and a lemon shaped head which is most common with arnold chiari malformation and how they were concerned about hydrocephalus developing. He just went on and on and it was all too much. Then I realised why he making his point so hard and it was because he wanted me to have amniocentesis .

Amniocentesis is a procedure used to diagnose fetal defects in the early second trimester of pregnancy. A sample of the amniotic fluid, which surrounds a fetus in the womb, is collected through a pregnant woman's abdomen using a needle and syringe. Tests performed on fetal cells found in the sample can reveal the presence of many types of genetic disorders, thus allowing doctors and prospective parents to make important decisions about early treatment and intervention.

I understood the reasoning behind this procedure but it wasn't going to change my decision in keeping the baby and I think that is what the point was without them saying it. I remember he was such a hard doctor and no bed side manner at all. I think there comes a point when a doctor needs to decide how much information we needed to hear and then give us the opportunity to ask for more information. Instead of forcing all these thoughts in my mind. For me I just needed to know what to get through to the birth not all these what ifs. We decided no was the answer for the amniocentesis but that didn't stop them for pressuring us right up to the birth. After the ultrasound I was frazzled, the case worker had finished early so we were sort of just left with this information and struggling to process it.

We spoke to a kindly obstetrician and he said that I should have a c-section when the time comes. I was to be checked each fortnight at our local hospital and come to the Mother's for checks once a month. I explained that the local hospital didn't want anything to do with me as the pregnancy was too complicated for them and he said he would take care of that. And he did take care of it. We got a phone call on the way home from the local hospital asking us about what appointment times suited as they had received a phone call from the other hospital telling them that they would be sharing the care for antenatal appointments.

The day was long and we barely got to eat with so many appointments, though overall the experience was a positive one we were left with many questions that I know I didn't want answered just yet and so many possibilities. My brain had so much information cycling through it. We just sat in silence on the way home. I remember we were listening to Sons of Korah and the song that was playing was Psalms 139, the tears ran down my face but at the same time I felt it was all in God's hands and he was taking care of it all and even though I felt like I was in a dark place he would be the light. This was the first of many times I felt in a very dark and lonely place. And so finding normality within my pregnancy, planning the arrival of our little one, with the news of what I had to face in the coming months, returning to work, meeting with friends and my pregnant friends I wondered how I was going to find this normality.

But really what is normality?

A Plan

Our trip to the neurosurgeon took us to a different hospital again and I wasn't really sure what to expect. We were just following this road laid before us because we didn't know how else to proceed. As usual we arrived way to early and sat in the corridor and I read my book The Promise by Naomi Reed and I think my other half was reading a train magazine. We watched the lifts go up and down and I know I thought that is how I feel, emotions up and down. I tried not to think of what this appointment held.

We eventually went into Dr RC's office and the waiting room was full of a variety of people. I saw a few younger people in wheelchairs and wondered what there life was like or how there parents coped. Finally we got called in and we were faced with a man of medium height in a blue/black suit with a stern face, his office had a huge desk and we sat opposite him. I suddenly felt very protective of my unborn baby as he talked of surgery and what would happen after the birth. He spoke of spina bifida, hydrocephalus and arnold chiari malformation. He also talked of what would happen after the birth, how the baby would be wrapped in a cling wrap material to protect the baby from infection, I started to tune out and just took in very basic information. My husband absorbed more I think but I was just concerned with now and getting through to the birth.

The neurosurgeon then asked our plan and we said what plan? The plan for antenatal care and the birth, and he added that our obstetrician didn't do births so what were we going to do? I didn't know, I hadn't thought about it. Our own home hospital had basically disowned us so I really had no idea. I think that we must have looked confused as he said well, let me call the hospital here and sort something out. A consultant neurosurgeon took the time to call the antenatal clinic and spoke to a doctor and arranged for us to go over and talk to them. We were so overwhelmed by this specialist doctor taking the time to help us. He then said there are some useful associations and websites to learn more about spina bifida, hydrocephalus and arnold chiari malformation. There was a local group nearby and he looked them up and printed out directions on how to get there so we could get more information and support. We were astonished by his kindness! So we thanked him and headed over to the Mother's Hospital.

It wasn't like any other hospital we had been to, it was nicely furnished, extremely clean, light, airy and life seemed to be in the air. We went to the antenatal area reception and were warmly welcomed and within minutes two ladies were fussing over us. They were organising antenatal appointments, ultrasounds and appointments with doctors and of course this is where the baby was going to be born. These ladies gave us encouragement and such care that we felt we could tackle this challenge even though it was so unknown. We were to come back a few days later to start the process. Now we had a plan!

Help Found

Finally the day arrived and we drove to Brisbane for our appointment with a specialist obstetrician. Nerves welled in my tummy and as the appointment wasn't until the afternoon we got some lunch and then headed to the big hospital. An experience in itself to get there and find a park. After round and round the hospital car park we found a spot. We were really nervous and feeling so overwhelmed, as we were going to hear about what our future might hold for us and our little one. The day was sunny and warm and we sat in the sun for while in silence.

We headed up to the doctor's suite and it was a very quiet, low lit room and with pictures of pregnant women and babies around. This just made me feel so much more anxious. At last we got called in and we were first to have an ultrasound, I felt sick and a little tremblingly, I was weighed and the lady who was doing the scan was pregnant also and I wondered what her baby was like and if she was well and healthy.

The difference between this scan and the previous scan was that the the lady doing the ultrasound wasn't afraid of looking at my baby. She explained all the exciting aspects of the development, this looks good and listened to the baby's heart beat, what a moment, the reality of life inside me. I heard another life, a life growing within me. Wow!

After bringing a much needed confidence boost back into our pregnancy Dr FC came in and examined and explained about what spina bifida is and what causes it.

 (please see conditions explained for more information)

He said that it wasn't my fault, I did all the right things, I ate well, I took lots of different vitamins. I think what hurts is when other people said did I take folate? Of course I did, it's like others were implying I was the one who caused this.  I know deep down it isn't my fault but it still hurts when people say it. 

Another important discussion was about what is Arnold Chiari Malformation and what does it mean for our little one. Of course it is hard to know until the baby is born but at that point there is no hydrocephalus and it is looking ok. At this point he could see no reason why our little one wouldn't run jump and play like any other child. Wow, this statement lifted our spirits and Dr FC was so honest and up front that we were given hope that the future was still there for our little one. It is what we needed to hear.

He said that I should have a c-section and meet with a neurosurgeon as the baby would need surgery soon after birth to seal the hole in the back. They would wrap the baby in a type of cling wrap to protect the exposed hole from infection. So we left Dr FC's room encouraged and hopeful. We got an appointment with the neurosurgeon a few days later so drove back home. 

We had no idea what the neurosurgeon would say or how his acts of kindness would pave the way forward for my antenatal care.

In the Beginning

Where to start? When I pictured my life I pictured myself, as married with children, a house, friends and even a dog. A typical dream of a young girl. A happy ever after story with no major life challenges. The day we decided to have a baby my life changed. The excitement (also, thinking, what have I done!) and keeping the secret of being pregnant from everyone. Only a secret between me and my love. What an exciting blessing!

The day came when we shared our joyous news and sharing the excitement begun. One night I started having cramps and realised I needed to go to the hospital. I knew it was going to be fine but didn't know what was wrong. We shouldn't have had to wait so long but four hours later a scan was completed and it showed the little baby to be fine. What a relief! A follow up with the early pregnancy unit the next day confirmed the baby was growing well and nothing to worry about.

I excitedly booked the eighteen week scan with no worries at all. The day of the scan came and my husband and I were excited but nervous. We arrived early. I sat waiting hoping my bladder would not burst. We went in and the room was dimly lit and the scan begun. The lady, who I remembered had glasses started the scan and didn't say much but I wasn't worried. Then she said she wanted to ask the radiographer's opinion and quickly left the room. I instantly started to feel sick and asked my husband what's going on and he didn't know either. Butterflies overtook me, my hands became moist and I silently trembled. Fear was closing in. I started to panic. The lady returned with a man who said he just wanted to have a look at our baby.

That was when our life changed forever...

I said what's wrong?

The next moments are a bit of blur. I felt sick, my hands shook, I sweated and tears streamed my face. I was no longer lying there but watching my life unfold with no ability to control it. Fear engulfed me. 

The radiographer said that our baby had spina bifida and arnold chiari malformation. I had only read of spina bifida on the vitamin bottles but never arnold chiari malformation. I remember asking only would I make it to full term and he said that he didn't know and I needed to make a plan. The man with the beard said, "if it was my daughter I would make a plan". I can't remember what happened next only that the lady said that she needed the room for someone else and so we had to leave. We sat outside for a time, I don't know how long but I just wept.

The only contact we were given was go to our GP or contact the early pregnancy unit at the hospital otherwise we were on our own with no understanding or support or even help. 

Our first stop was to visit my mum and dad as they were excited about the scan and would be wondering. So we made a visit. I ran into the house looking for my mum. Dad was concerned and I left him with my other half frantically searching for my mum. She came up the stairs and and I remember her holding me and then we all sat down and it was quiet. 

What were we to do? We had no direction and no help! I rang the hospital doctor and left a message and a nurse called back several hours later and said I would have to wait at least a few days to get an appointment. At that point I said no this is not good enough, I don't understand, I don't know what is wrong, I must see someone. So that afternoon we met with a short, skinny, emotionless doctor and I remember the first question. Have I considered an abortion? How could she! I don't even understand what is wrong and you are trying to kill my baby! She contacted a private obstetrician in Brisbane. Thank you God, we got an appointment a couple of days later. 

The next hours and days were morphed into one nightmare. I felt numb and lifeless. All I remember doing is trying to complete a jig saw puzzle and not Google what the baby's condition was as that made me cry and shutter. I hid my maternity clothes and books as it was too much deal with at that point. Surely it is going to be ok. I prayed and prayed. 
I just didn't understand.