Katharine’s story

I approached my 20-week scan with the same excitement and joy that I had done for my previous two pregnancies. My husband sat next to me as the sonographer scanned me and it seemed to be going okay other than she said the baby seemed a little small and said that I would need to return in a few days for another scan with a doctor.

I thought they were fussing about nothing but as I went to leave the sonographer said something about a lemon shaped head. I wasn’t sure what this meant but that was the first time I felt that something could be wrong. Later on that day I googled “lemon shaped head” and saw that this was associated with spina bifida. I felt a horrible dread inside as I read those words.

My sons were 4 and 6 years old and I had to muddle through school pick up, swimming lessons, dinner, bath and bed before I could speak to my husband about it. I remember being upset and not wanting to look at any more information on the internet. My husband had done a little bit of research and reassured me that even if the baby did have spina bifida, there are very different levels of seriousness and that we just needed to wait for the next scan. We prayed for the baby together and on the Sunday, we went to church and I asked for prayer at the end of the service. I felt really confident that everything was going to be okay and that God would ensure that our baby was healthy and well.

The day of the next scan came and I remember feeling a bit nervous, but overall confident that it was going to be fine. We went in and the doctor started the scan. It wasn’t long before she stopped, got me sitting up and asked her assistant to get a box of tissues. She confirmed that our baby did have spina bifida and that it was an extreme case. I burst into tears. After that I don’t remember much of what was said; I remember looking at her and her mouth was moving but I wasn’t really taking in the words. My husband later told me that she mentioned termination, but I don’t remember that.

We decided to go for another scan a couple of days later in a different hospital with a spina bifida specialist. On the way we discussed how we could adapt our lives to bring up a disabled child; we were talking about buying a bungalow and a different car. We knew it would be hard but we were ready to make those changes for our baby who we already loved so much. What was much harder to contemplate was what we would decide if we were advised that the baby’s quality of life would be very poor. To know that God had blessed us with a precious baby whose life I was considering ending, and that my faith was so weak that I didn’t believe he would heal it, was deeply painful. I believed that God could definitely heal our baby but I wasn’t at all sure that He would and I felt guilty for that.

We arrived early for the appointment and went to a café in town; I remember breaking down in the toilet and absolutely begging God to make everything better. I said “You have to make this better, I don’t know how, but please, please, please make this better.” What I feared more than anything was that the consultant would be vague with us- that he wouldn’t be able to say with certainty how the spina bifida would affect the baby as it matured.

As it turned out he was extremely damning and extremely blunt. He said that the baby had brain damage and would have no movement from the waist down, that they wouldn’t have control of their arms or be able to communicate beyond grunts. He said, “If you want to know about quality of life, there will be none.” He explained that the baby would need multiple operations throughout their life, that they would spend a lot of time in hospital and that he has watched families be torn apart by the strain. He told us about patients who he has operated on over 100 times. He told us about research that had looked into their quality of life as adults and a significant number had said they wished they could die. If our baby had been born 100 years ago then it would certainly have not survived past a few days, but he explained that the NHS would not allow for medical treatment to be held back from the baby and therefore the kindest option was to terminate the pregnancy now.  

It sounds strange but I felt that God had answered my prayer to “just make it better”. The consultant helped me to see that if I terminated the pregnancy, it would not be because I didn’t want this baby or love this baby enough, but because I loved it so much that I would save it from a lifetime of pain.

My husband wanted to visit our church minister before we made a final decision. I felt sorry for him as I can’t imagine a much more difficult situation for a minister to face. He listened to us and was very supportive. I cried a lot and he assured me that there was no condemnation and that nothing could separate me from God’s love. But having said this, I could tell that he didn’t think we should terminate. We spoke to friends at church and they were all incredibly supportive, but again, ultimately I felt that they were trying to encourage us to keep the baby. A lady messaged me saying “Read psalm 139 and rest in the fact that your little girl is very precious to God…He has a plan and purpose for her” (at this time we didn’t know that we were having a girl). Someone else messaged and said that they were praying for us and that we shouldn’t worry because “God doesn’t make mistakes”.

I don’t really care if other people think what I did was wrong- I feel absolutely at peace with our decision and I thank God for that.

Despite this soft encouragement to continue with the pregnancy we both felt that to continue would have been desperately unfair on the baby and on our two boys who, when we passed away, would be left to care for a heavily disabled sibling. I wished that my body could have made the decision for me and then I need not carry the guilt and shame of having my baby aborted. But I felt so strongly that we were carrying this pain in order to save our baby from feeling any pain.

In the maternity ward we were led swiftly away from the blooming mums and into a prettily decorated room which I quickly realised was the sad room, for people who had lost babies. I was induced at just under 22 weeks and gave birth to a beautiful baby girl who we named Eliza (which means given back to God). I felt so much love for her as I cradled her in my arms and I didn’t want to let her go ever. They said I could keep her with me for the night but that she had to lie on a cooling pad and I found that really difficult. The next day they said we could go when we were ready and I remember thinking that I would never be ready to leave her. Walking out of that room were the hardest steps I have ever walked.

Eliza was buried in our local parish church a week or so later. My husband carried the little wooden coffin to the burial place and our two boys held my hands as I sobbed. You really know you’re alive when something like that happens to you and you feel utterly ripped apart. I had to keep going for the sake of our boys, but I felt like I was bleeding out.

Our church family were incredible and dropped round countless meals and flowers. I felt totally exhausted by all the talking; I’m sure it was helpful for me to talk but there were times when I felt that I had said it all and had run out of strength and words…then the doorbell rang and I would have to start talking again.

I particularly remember one visit by an elderly couple from church who popped over with a cake. During the conversation the man said, “As for whether it was the right decision, we’ll never know” to which I replied, “I feel absolutely at peace about the decision, it’s the loss that is so hard to bear.”

That really sums up how I felt and how I still feel 5 years on. I don’t really care if other people think what I did was wrong- I feel absolutely at peace with our decision and I thank God for that. When I look back at that time I know that God was holding me every painful and desperate moment. One morning I lay in bed sobbing and I truly felt that I was being held in His hands and He was telling me to be still. In the following months there were times when I thought I would never be happy again, but I never felt alone or that God was angry with me; I felt that He was holding me in my pain and reassuring me that Eliza was in the safest of hands. I believe that one day I will meet her again and she will be healed and perfect.