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!

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 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.