My Disability Matters Club

My pregnancy story – a baby with Spina Bifida

I was 17 years old and thought I could take on the world by myself. I had moved out of home on the Central Coast, NSW and I had moved in with my grandparents in Windsor in Western Sydney. I had a full-time job in a high-stress environment that was in a Vehicle Smash Repairer. I was a receptionist, payroll, accounts receivable and payable. I was the one that made sure that shop ran smoothly from dealing with aggressive and impatient tow truck drivers to making sure that everyone within the shop was doing their job properly and on an achievable timeline. This job was very stressful to be dealing with such rude and arrogant people but I was always up to date with all my work.

During this time of moving to Sydney and having a full-time job, I thought that I might just try and make some friends and maybe even date a little. Within the first few weeks I had met a guy through Facebook, he seemed decent enough. I started dating him and things were going amazing to what I thought but 3 months into the relationship I could start to tell that something was not right. He was always locking me in his room to have sex with him, he was possessive and controlling of where I was going and who it was with and how my money was spent. I was so scared to be in the relationship but I was also so scared to leave the relationship as I didn’t know what the ramifications would be if I did. So in saying this my grandmother that I was living with decided to take this into her own hands and ended up breaking the relationship up with him for me.

2 Weeks later I had found out that I was pregnant. I organized my doctor’s appointment to get approval that I was but before that appointment, I had gotten into contact with my exes mother to make sure that there was no medical history that I would need to know about that would possibly be a terrible quality of life if the baby were to have it. I was told (mind you his mother was heavily intoxicated when I had rung her) that I was being ridiculous and that there was absolutely nothing wrong with her family and that if there was anything wrong then it would be my family that would have done it. At this point, I was absolutely pissed off at this family!

The doctor confirmed my pregnancy.

I had continued to work for a further two months until I started having Grand mal seizures (I am an epileptic and was already on a high dose of anticonvulsant medication) due to the high-stress environment of the boss being the usual Bipolar self and attacking me verbally when it wasn’t needed. So I gave notice and quit, I had helped them find someone else to take my place and I had trained them up before I left.

I was still living with my grandparents in Sydney and I was trying to keep things civil between myself and my ex and his family, which I did and I would keep them in the loop with telling them I was pregnant. At this point, my ex had told me to move in with him so we could be a family. I had told him that even though I was carrying his child I was not going to be putting myself and my child back into an abusive situation he had me in. With me saying this to him his response was for me to terminate the pregnancy, which I was not going to do as my belief with terminations is very strongly against it. Even after all this went down I still persisted with being civil and keeping my exes mother in the loop with the pregnancy until I was 12 weeks pregnant. As at that point, my exes mother decided that it was going to be best for me and my unborn child to move in with her family rather then me being with my family. Who does this? Who tries to control a situation that much that they think it is better to be with a family I hardly knew then be with my own family? seriously?

I had moved back to the Central Coast to be with my parents. I was super excited to start my pregnancy with no more issues with my exes family. I went for my 12-week ultrasound at this point I was praying and hoping that there was nothing severely wrong with my child. If my child were to have a condition that wouldn’t have been able to give him a good quality of life I would seriously think about termination so the child wouldn’t have to go through so much pain and misery through life. I had come out of the ultrasound with them saying that everything is looking good and the baby is looking in healthy condition.

This was the best news I could ever hear! I continued with the pregnancy and was ready to take every moment in my stride and enjoy every kick that my unborn child would give to me.

For the first two trimesters, I was vomiting breakfast, lunch, and dinner. There was no stopping this uncontrollable vomiting every time of the day, IT WAS UNBEARABLE! Everything I ate was been thrown up. It was horrible, I struggled to be able to hold down anything. I wasn’t gaining weight nor was I even showing any sort of baby bump.

Besides the all day sickness the feeling of pregnancy was amazing by about 18 weeks pregnant I started to feel my little child moving around and being very active.

It came time for my 20-week ultrasound. I went to one place and they said that everything is looking good and that they think I was having a boy. I then went back to my GP and they wanted me to a different radiology because they believed that the place that I had gone to weren’t very reliable as the year before my mother had gone there for an ultrasound on her gall bladder and they had said there was only one or two stones in her gallbladder but when my mother was crunched over in pain and taken to hospital they had to take her for immediate surgery as her gall bladder was chock full of stones.

So I got another referral to a women’s Radiologist, I wasn’t able to get in for an ultrasound to this place until I was 24 weeks, which  they not only did a normal ultrasound but also did an internal which got me worried a little bit because the sonographer wasn’t telling me what she was seeing all she had said to me was that I was having a baby boy. After she was finished with all the ultrasound she had said she needed to talk to the doctor to get my ultrasound looked at immediately. I sat there waiting for about 20 minutes in my worry and feeling scared about what I might just hear next from the doctor. The sonographer finally came out and asked me to go on the phone to the doctor as he needed to talk to me. I went in and started speaking to the doctor. He had explained that my son has something called Spina Bifida. He then didn’t exactly explain much to me about what it was, all he said was that it was the worst form possible and that I needed to go to the local hospital and unfortunately give birth and let my little boy pass away.

I had gone to the local hospital and was put into the maternity suite right next door to another lady that was screaming giving birth and then hearing the baby come out crying, whilst I had the doctors sitting right in front of me telling me I need to have a stillbirth because if I carried on with this pregnancy my little boy being alive would be not worth the struggles he would go through according to this doctor. Then there was a big but coming that would be the biggest blessing ever. The doctor had explained that with me being so far along that I would need to have a second opinion before I go ahead with letting my baby to die.

It was about 1 week until I was able to get an appointment with Royal North Shore Hospital Pre-natal clinic. During this week of waiting for that appointment, my mother, father and myself had started to plan my unborn child’s funeral. We were looking at coffins and everything… This was the saddest time in my whole life and the biggest decision I would ever have to make. Every day I would wake up crying and I would go to sleep crying. Singing to my little boy every day that I love him but I have to say goodbye….. its the worst feeling in the world that a mother would have to say goodbye to their child before they’re even born…

The longest week of my life had finally finished and it had come to the day that I would finally get the second opinion that might just end my child’s life…..

I went in for my appointment and the doctor had looked at the ultrasound report and the ultrasounds himself…..

The doctor turned to me and said so your son has Spina Bifida. He explained that he has Spina Bifida over his S1, S2, and S3. He explained with this being at his sacrum level of his spine he shouldn’t have too many problems with his upper half but he may have difficulties with his lower half of his body. He had also explained that with how the Spina Bifida was so low on his spine and how small it was only being over 3 little bones that my little boy had 70% chance of being a normal child but there is 30% chance that he may be totally incapacitated. He had also told me that he can give me all the information and all the statistics in the world but the choice had to be mine to make to keep him or to let him pass away.

I had to step out of the room and get some fresh air as I was just emotionally overwhelmed.

To think of the possibility that I might be able to hold my baby boy and watch him grow up and watch him eventually get married. It was the best thought that I had all week. I had called my dad (whom of which had been struggling with mental illness for about 3-4 years and had been through a lot) and he had said to me with those statistics of 70% being a normal child that I should take the risk as he had believed that my son had been brought into our lives in order to save my dad from doing something silly like committing suicide. Hearing that he believed that I was meant to have this child made me confirm that I wanted to go ahead with the pregnancy.

I continued with the pregnancy and had my care moved from my local hospital to a high-risk Pre-Natal clinic at Westmead Hospital. Everything was not going to bad with my pregnancy from 24 weeks pregnant, vomiting had settled down and started gaining weight and I was starting to show my baby bump and then when the 30-week ultrasound came around I had been given more bad news. I had been told that my sons head was smaller than what it should be, it was 3 weeks smaller than what it should have been that suggested that I should get an amniocentesis done to determine what type of genetic condition he could have that would be causing this. I had decided to go ahead with it as I knew I needed to know what I will be dealing with on top of his already diagnosed Spina Bifida.

At 32 Weeks I had found out that my son had a rare genetic condition called Velo Cardio Facial Syndrome which was a 22q11 deletion. I had then gone to a geneticist and they had explained that there isn’t much information on this condition and it can be unpredictable as to how impacted the child can be from the condition. I was explained that Velo meant that his Pallete inside his mouth could be affected so stuff like cleft pallet could form etc.. I was explained that cardio meant that he could be having heart problems major or minor. Facial part of the syndrome meant that his facial features will be smaller than normal hence why his head had been 3 weeks smaller in the ultrasound.

During this 32 week stage of my pregnancy, I had my baby shower planned as well.

I couldn’t wait for some happiness and being able to celebrate my little boy that was getting closer and closer to meeting. The baby shower was amazing, I had family, friends, and family friends all there to help me celebrate. We played games and put on bets on how much my little boy would weigh and how long he may be and what date he would be born on. I had an amazing day! So much love and support and lots of presents that helped set me up and prepared me for what was to come.

That night I had a shower and I unfortunately slipped and got a bit bruised the next morning I had woken up thinking that I may have broken my waters so I contacted my high-risk clinic in Sydney and asked them what I should do and they suggested that I should come down to the maternity ward to be assessed. So I went down and was assessed they were sure that I hadn’t broken my waters but they wanted me to stay in the hospital until I had him just to make sure that both of us are safe.

It was week 33 and my parents and younger siblings had booked a family holiday in Vanuatu and they were very hesitant about leaving me behind in a hospital but I had said to them that I was only 33 weeks and that I still had a long time to go before he would be coming so I told them to go and enjoy their 1 week holiday in Vanuatu.

I was on constant monitors to make sure they could still hear my sons heartbeat. With the stress of being in a hospital, my epilepsy started seriously playing I was at least having a seizure every day. On Monday the 18th August 2014, this day I had been told numerous things were starting to go wrong with certain blood tests, this stress had caused me to have 3 seizures in a row which subsequently they were unable to get a trace on my son’s heartbeat. The doctors had come in and told me that I needed to go in for an emergency cesarean to be able to get my son out and make sure that he is ok. An hour later I was in theatres getting a spinal tap done before my cesarean. My parents and sibling were still over in Vanuatu and trying to get the next available flight back to Australia to be there for me when I have this baby boy. I’m lucky that my grandmother was brave enough to come in with me whilst I had this cesarean.

As soon as they had cut into the amniotic sac the fluid was like a waterfall and had gone everywhere, all I could see was nursing staff jumping out of the way so they would get wet. The doctors had noticed as soon as the amniotic fluid had gone my son had decided to go from being head down to turning around and going back up to my chest. All I could hear was the doctors screaming ‘Quick get him, grab his feet, grab his feet’.

They managed to get him out and he was whisked away and the Paediatricians were all over him and making sure he was ok. I didn’t get to hear him cry and I didn’t even get to hold him. They let me see him then whisked him off to the NICU ward at the Children’s hospital right next door. My grandmother followed him to make sure he was ok for me. I lay there waiting to be sewn back up and worrying about my little boy and if he was ok.

The next day my parents and siblings had finally gotten back from Vanuatu and came straight from the airport to see me. They had got me from the maternity ward and taken me next door to see my little boy. Once I had gotten there they asked me to start expressing milk so they can feed my son, whom I named Cooper Mitchell Gavljak. They also asked me to sign paperwork as he had to go in for surgery that day, but I suppose that’s another story to be told…

Thank you for reading my experience and I hope that maybe some people might be able to relate to similar thing that they may have gone through themselves.


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