Terminating our Baby Boy's Life - Our Story with Spina Bifida by Lucy

You never think it is going to happen to you. The ‘it’ being miscarriage, stillbirth or medical termination. The ‘it’ that happens to so many women around us. The ‘it’ we don’t speak about until it’s happened to someone close to you. 

Falling pregnant and becoming a mum was something I had always wanted from a young girl.  Shaun and I had been together for years and together, we had made the decision that we were ready to start a family. For us, we fell pregnant easily and couldn’t have been more excited. 

Our 12-week scan was the best thing I have ever seen. Measuring perfectly to date and fist pumping to say, “Hey!” Feeling great and with a ‘healthy’ 12-week scan, we did what most people do. We told our extended family and friends. I decided to do a social media announcement, sharing our excitement with everyone.  Comments of congratulations poured in.  We were just so excited. If only we had known what was ahead. I now have a very different view on the ‘announcement’ of a pregnancy.

Our 19-week scan was booked and the weeks were dragging leading up to it. I couldn’t wait to see our little bub again! Mum even came along, being the first grandchild in the family, it was all so exciting. The sonographer explained that this scan would take longer because she had lots of measuring to do. It was difficult as bub was moving around so much.  She was silent throughout, paying special attention to the heart, spine and brain. As a trained paediatric nurse, I just assumed it was due to the importance of these organs.

The lady asked me to empty my bladder and we would finish the scan when I got back. When the lady returned, she came in with another women and introduced her as the doctor. My heart sunk. I was anxious, nervous and for some reason knew whatever was coming next, was going to absolutely ruin me. The doctor explained there had been some concerns with my scan and that I would need to book in to see my GP that day. I crumbled. Between the tears, I asked why and what. She told me she had to finish the report and my GP could go over the results. I asked again. I begged her to tell me. I asked what part of the body she was concerned about. Five words I did not want to hear… “the head and the spine”. 

We saw my GP an hour later, who booked a scan with a specialist at King Edward Memorial Hospital (KEMH) that afternoon. She couldn’t give us much explanation until we had a secondary scan. She spoke with that same devastating tone and body language. 

We arrived at KEMH feeling absolutely shattered already, knowing the day was nowhere near over. The waiting room was full; full of pregnant, happy and excited women, with their equally as happy partners. Shaun and I sat down, out of place, in a waiting room we wished we wanted to be in. 

We were seen by a lovely midwife who again spoke in that same tone as the doctor and my GP. We knew the news was going to be horrible. A clinical midwife was going to do the scan and finally explain what we were dealing with. She was calm, friendly and comforting.  I lay down on the bed and lifted up my shirt to expose my small baby bump that I was so proud of. It was finally showing and people were starting to notice. 

She pressed the probe against my tummy and showed us the head shape they had initially been concerned with. She ran the probe down my baby’s back, showing us a little sac growing outside the spine that contained important spinal nerves. Growing outside the spine meant these precious nerves were exposed and becoming damaged as my baby moved inside my womb. It was confirmed. Our beautiful baby had spina bifida, formed when the neural tube closes to form the spine in the first month of pregnancy. There was nothing I could have done differently, nor could it have been detected until 16 weeks. She explained what life would be like for our baby as he grew older. She explained the potential and the potential challenges. She was honest about what our future life would entail. We had a choice to make. The hardest and most unfair choice a parent should ever have to make.

We took the news home, with a decision to be made overnight. I made the call the next morning. I somehow managed to tell the midwife we had made the decision to terminate. Words that seemed so hard to spit out. We knew this was the right decision for us and there was no thinking otherwise. That doesn’t make it easier to say because we were ending a desperately wanted pregnancy.

I went in on the Friday to speak to the doctor before being admitted on Saturday morning to give birth. We sat in a quiet room, it looked and felt like the ‘bad news’ room we had in ICU when I was nursing. Couches, tissues and a jug of water on the table. The doctor explained what Saturday was going to look like. He explained the potential chance of theater if my body decided it didn’t want to pass the placenta within an hour after birth. He explained that it could take all day. He prepared me for the worst I suppose, as if it could get any worse than it already was. Then came ‘the pill’, the little, light blue pill that held so much power. The pill that would stop my pregnancy. Stop the hormones rushing around my body. Stop my baby’s heartbeat. Going against everything I thought I believed in, until it was me in this position. 

Saturday morning we drove to hospital in silence. I was going in knowing we would leave with nothing. I was admitted at 8am to a gynecology ward. The nurses were amazing. We got started at 9am and two tablets were inserted to induce labour. It was uneventful until 12pm. The pain started off like normal period pain and then started getting worse. At 1pm the nurse inserted the second dose and it only got worse from there. Contractions started and the pain grew. 
I can’t explain it in any words, other than it being the worst pain I have ever experienced. I suppose the only people that understand, are those that have endured childbirth. But for mine, there is no motivation of a healthy baby, full of life. I needed 3 intramuscular morphine injections throughout and the gas (which did absolutely nothing!). By 5pm the pain was unbearable. 

Shaun was my superstar during this whole ordeal. To see me go through that much pain and emotional suffering would have been horrendous, but he was incredible and inspirational. The doctor came in to review me. I was curled over on my knees and elbows, crying and screaming the ward down, when I felt something different. The nurse explained that my waters needed to break so nothing was going to happen until that happened. But it was. I knew it was coming. I gave a push because it felt right and out he came. The pain was over almost instantly. 

Our baby, William, fully encased in the intact amniotic sac, was lying on the bed, all 23cm and 220 grams of him. My waters did not break, instead I pushed a ‘balloon through a small cervix’ as the nurse explained. It was a ‘Caul Birth’, a 1 in 80,000 chance and apparently a sign of good luck. 

Shaun cut our son’s umbilical cord and the nurse took him away. I was somewhat relieved, but physically and emotionally exhausted. I had another injection to help my body pass the placenta, which ended up passing just in time – saving me from theatre. 

We asked to see our baby and the nurse returned with a tiny basket, something your young daughter might carry her doll in. She took off the blanket to reveal our little William. I felt this sense of joy. For some reason, I couldn’t cry. It was a strange sensation, but I felt so proud of our boy. I fell in love. He was perfect. His nose, lips, fingers and toes… all perfect. He had the obvious lesion on his back, confirming his diagnosis, but if it wasn’t for that, you couldn’t tell. He looked so small in his daddy’s big hands. It wasn’t the way it was meant to be, and it certainly wasn’t fair. No parent should ever have to do this. That night, we held him until we couldn’t keep our eyes open any longer. It was a huge day, and we were both exhausted.

Our parents and siblings came in to meet and cuddle their grandchild and nephew. It was something they were all hesitant about, but they are now so glad they did. A proper goodbye and closure for everyone, so when we talk about him, they just get it.

The next day, before discharge, we spent the morning with William. I couldn’t take my eyes off him. He was amazing. When the time came, saying goodbye and leaving the hospital was cruel. I still don’t know how I managed to walk out of those doors with my back to my baby boy, leaving him inside and walking away empty handed. We felt totally ripped off. 

And now, 12 weeks on, we manage… just. There are good days and there are bad days, but I know William Hugh Bryant is looking over us and will be looking over his future brothers and sisters. I am now on high dose folate, which should prevent this from happening again. Hopefully we can start trying soon. The nursery is ready and we are ready. 

We are both so lucky to have such a supportive family and a large group of supportive friends, but unless you have been through something like this, you don’t really understand, and that is what I have found quite hard and isolating. Through Sands QLD and a Mamamia podcast (Rebecca Sparrow on surviving and thriving after loss), I have found and joined two Facebook pages, both providing me with environments where I have felt safe and supported when sharing my story and questions to other amazing mums in similar situations. Reading others’ stories and journeys has reassured me that I will get through this and I am not going at it alone. It is place where I can share how I am feeling with people who just ‘get it’ that little bit more. 

I write this with a slight sense of frustration, as I wish I had been educated on just how hard having a baby can be. No one told me that these things happened as often as they do. It’s an unspoken topic that needs to be spoken more about and it frustrates me how little we all know about it. We need to start the conversation that having healthy children is a miracle and should not be taken for granted. Every pregnancy is a life that should be celebrated; miscarriage medical termination or stillbirth. This is to all the amazing mums and dads out there who have never met, held, or like us, taken their baby home from hospital.                     

Lucy

                                                                                                  

If you require support after reading this blog, please contact Sands on 13000 72637

Lucy Taylor

Hi my name is Lucy, I am currently a primary school teacher, after making a career change from paediatric nursing. My partner and I lost our first child in May 2017 after finding out at 19 weeks he had spina bifida. We really had no idea how common miscarriages, still births and medical terminations actually were until it was us in the position. I wrote my blog to bring awareness to others like us, as well as to help other couples know they are not alone in this world.