“All I ever wanted to be was a mother, I felt that it was my sole purpose in life. After 3 years of trying to conceive and all of the heartache and disappointment of seeing only one line on a pregnancy test, month in and month out, we decided to see a fertility specialist. It turned out that I had something called Hydrosalpinx (blocked fallopian tubes) therefore making me infertile. Our only option going forward would be to start IVF. Our first round was unsuccessful, I had a very early miscarriage at 6 weeks, we knew that IVF didn't mean a positive outcome but it was so disappointing. Luckily we had a frozen embryo left from our fresh cycle and after 8 months we started the process for a frozen embryo transfer. To our delight, it worked and at the age of 34 I had my first ever BFP. (Big fat positive!)
I can’t describe the feeling, it was euphoria, relief, gratitude all in one. I felt so amazing, my pregnancy was very kind to me, and I radiated happiness. We had our nervy 13 week scan, and everything was fine. The following few weeks I felt all of the flutters and so much movement, I joked we had an acrobat in the making. We got to 20 weeks and went for our anomaly scan. I was very excited to see our baby again but I also felt incredibly nervous. During the scan everything looked great with no problems. The final check was on the heart, and I vividly remember my husband and I being so happy in that moment and feeling so very lucky that everything seemed OK. Sadly, that was short lived.
I suddenly felt a shift in the mood, our sonographer became quiet, she kept asking me to change position, and I quickly realised that something was very wrong. I asked her if everything was OK, and she told us that she could only see 2 chambers of my baby's heart when there should be 4. She said she needed to get somebody else in to have a look and check. I just knew it was bad news. Our baby had half a heart. We learned that he had a condition called Hypoplastic Left Heart Syndrome which is where only the right side of the baby's heart had developed. We were given 3 different options, none of which were easy choices. We could abort the baby, we could choose the medical intervention route which meant the baby would require open heart surgery after birth, and would need 2 further surgeries, or we could go for comfort care which is where we could have our baby and allow nature to take its course. After what were the worst few weeks of our life, we decided that we had already come so far, our baby had fought to get here from the very off, being a frozen embryo, we wanted to try the surgery route and to give them every chance of a quality of life, so we went ahead with the pregnancy.
For the first few weeks after we were very upset and distressed at what was to come, I had so many feelings to deal with, guilt, grief, and feeling so scared at times. I felt suffocated, there was so much uncertainty but eventually I realised that my baby was very safe in utero and I started to enjoy being pregnant again, terrified at the same time but it was no longer the dominant emotion. Ironically I didn't have any problems in pregnancy, I remember thinking it was some sort of bittersweet, my child was severely poorly on the inside yet the pregnancy itself was very kind to me.
I went into natural labour with Harry, I was 39 weeks+3. My labour was gruelling (a story for another time) but Harry was born a very healthy 71b 11oz. I was only able to hold Harry for a short time before he was rushed to the neonatal department. I got about 30 seconds if that, my labour had been almost 23 hours long and I was absolutely exhausted but those 30 seconds with him, I absolutely cherished. I made my way to the baby and mother ward to sleep, whilst Harry was being cared for in Neonatal. I remember lying there on the ward and listening to all of the newborn baby cries. I was alone, without my baby, a first time Mom who didn't feel that I'd had the chance to bond with my son. I remember feeling so detached from him and not really knowing what to do about that.
The next time I would see my son, he would be attached to lots of different machines with lines and wires covering his tiny body. Harry had to be admitted to Birmingham Children's Hospital a few hours after he was born. He was admitted to the cardiac ward where he would face his first open heart surgery within the coming days. I left Harry the first night he was born, I remember just wanting to go home and rest, I hadn't slept in over 48 hours. I was both physically and emotionally exhausted, but questioned how I could have left him? I struggle with that so much, even now, all these years on. I feel massively guilty for leaving my very vulnerable tiny baby but the truth is, I didn't know what to do. I was a first time Mom, I couldn't hold him and felt he didn't need me. I remember saying to myself, what can I give him?
When I look back and reflect on my maternal health journey, I still feel guilty but when I say that out loud, I feel annoyed at myself because I know, despite everything we have gone through, I have always and continue to do my best but sometimes it just doesn't feel good enough. I think many Mom's feel the same way, and not just to those who have special needs children, I think every Mom feels that way at some point. There is just such an unbelievable and an unrealistic amount of pressure in everything that comes with being a mom.
Harry is 9 now and it is safe to say that during our difficult periods regarding Harry's health, I never left his side! He is currently doing really well and even though I know we still may have some difficult paths ahead, I couldn’t be more proud of my amazing son.”
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