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.