You are going to have to be patient with me. I need to share Holly’s unedited version of events with you but it is so incredibly hard to do so. I hadn’t wanted to, I was worried what people would think and wanted to protect Holly’s memory. But I’ve come to realise that to fulfil Holly’s legacy, I have to do this. I have to achieve what I set out to do, I have to help people who might go through the same thing and I have to share in Holly’s memory, out of my love for her.
Rewind to our 20 week scan. I wasn’t expecting anything to be ‘wrong’ with her. I was rather blasé and focusing more on whether we were going to find out the sex or not. At the end of her scan the sonographer told us that our baby had an enlarged heart, fluid around the heart and a slow heartbeat. We were whisked out of the scanning room to see the senior midwife who made us an appointment for the Monday at St Evelina’s children hospital, who specialise in fetal cardiology.
That weekend was pure hell. I lost track of how many times I googled ‘enlarged heart on fetus’ to try and gather some understanding of what could be happening to our baby. Google didn’t provide us with any answers though, as enlarged heart really could mean so many different things.
On the Monday we travelled to the St Evelina and were met by a senior sonographer. She spent an hour scanning me, in complete silence. I lay there listening to my baby heart beating at only 60bpm praying that thing weren’t as bad as I feared. After an hour she asked the fetal medicine consultant to come and scan our baby’s heart. 30 minutes more of pure silence as I watched every frown she made and tried to make sense of each sharp inhale.
Eventually the scan was over and we were asked to move to another room. My legs were like jelly. I clung on to the edge of the bed as I got up, terrified that I was going to pass out with the pure weight of my anxiety. We sat down and the consultant began with the words ‘Your baby has several severe heart defects.’ The tears that had been filling my eyes fell as my entire life changed in that second. Our daughter had complete heart block. A diagnosis which has a 1 in 20,000 chance of occurring, had left our daughter with her ventricles and aortas not working together, causing her slow heartbeat. She would need a pacemaker soon after birth to survive. Additionally, our baby had a suspected narrowing of her pulmonary artery, which provides blood to the lungs and a suspected hole in her heart, all of which would require open heart surgery soon after birth. Her heart was surrounded by fluid which if spread, would kill her.
They suspected that the heart block was due to me producing antibodies which were attacking her heart. After some blood tests it was confirmed that I carried the anti Ro and anti La antibodies which had caused this devastation. I was told that any future pregnancies carried a 20% chance of this happening again. The antibodies were found to be related to me having a syndrome called Sjogrens, an autoimmune disorder. All of this was an unknown to me, my previous pregnancy hadn’t been affected. The reasons for the hole in the heart and the narrowing arteries were uncertain though. It was unusual to have these alongside the heart block and our consultant had only seen this a few times in her 20 year career, which meant a prognosis was very hard for her to make.
After that first scan, we were given two options. Carry on or terminate. We felt that we couldn’t give up on her, we needed to know more. With all the will in the world and all the love in our hearts we prayed we could make this right for our baby.
Over the next two weeks we had another two scans. One, by a doctor who had only seen this four times in her career and suspected that our baby would develop fluid around her other organs (hydrops) and pass away. The other scan was more positive as the consultant felt that the previous narrowing of the pulmonary artery looked better and as her heartbeat hadn’t dropped, she was hopeful that we may get to 33/34 weeks to be delivered.
Unfortunately, things took a turn for the worse. On September 1st, at just over 24 weeks we had our next scan. Initially, the doctor thought things looked the same and as with all the scans my stomach left my mouth and I could breathe a small sigh of relief. But as the doctor fed back to the consultant, the consultant decided to scan me herself. She took her time and it felt like the first scan all over again. We were taken back into the same little consultation room and told the news that things had progressed much worse. Our daughter’s heartbeat had slowed to just over 50bpm. The narrowing in her artery was definitely there and the pressure at which the heart was working was so much higher than seen before. Her heart muscle was starting to break down, most likely because of my antibodies attacking her. The consultant didn’t think that our baby would survive pregnancy. If she did, she would require life saving open heart surgery but would never be an applicant for a heart transplant, which she would most likely need.
Our baby was dying. In the one place she should be safe, it was slowly destroying her. She was being forced into a battle where there was no way of winning. My heart bled. We went home and I couldn’t talk. All I knew was that no child should live with the fear of death. No child should be born into a world of pain.
Getting pregnant and expecting a baby is the most rewarding and meaningful moment in our lives. We get pregnant because WE want to have a baby. But the moment that I knew our baby was going to live a life of pain if she survived, that ‘want’ changed. I didn’t want for me, I wanted for her to live a life as she deserved. I wanted her to be able to do what other children do, I wanted her be healthy and dream as other children did. I didn’t want her for me, I wanted her for her.
That weekend, we made our decision. Our darling baby was dying and we wanted her to feel no pain. All she ever knew was my heartbeat and warmth and that was how we wanted her to stay. We made the decision that no parent should ever have to make and we chose to live this life of pain so that she would never have to. We did the ultimate gift of love that anyone could give. We chose to keep our Holly safe.
It wasn’t easy. I was terrified it was the wrong thing to do. I didn’t feel qualified to make such a decision but as her parents, we COULD make the choice. Holly had no choice but to live in the environment she was given, for as long as her heart would hold out.
I spent the whole weekend just wishing that she would pass away herself so that I wouldn’t have to live with making this decision. She didn’t move much anyway, as she didn’t have the energy but when she did I tried to ignore it, I couldn’t bare to think of her inside me. Out of everything, I will regret this forever. I wished I had just loved her inside me for that little bit longer, cherished every moment and spent time with her whilst she was still alive.
On the Monday we went back to the hospital. We spoke to another three consultants who all agreed that they didn’t think she would survive pregnancy and that we were doing the right thing. It didn’t make it easier, but it reassured me to know that they felt the same as us. We had held on for the five weeks in the hopes that she wouldn’t get worse but she was already dying.
I was given an injection through my tummy and straight into Holly’s heart. I have never been so terrified in my life. I wanted to run away but I couldn’t. I needed to look after Holly still. I wanted to keep my heartbeat slow that she wouldn’t notice any change inside me but it was impossible but before long it was done. Our little Holly had passed away in the most comfortable place she knew. We had saved her from pain by doing the unthinkable as parents.
There have been so many times that I have regretted what we’ve done but only on a surface level. I break down and cry because I miss her so much that I wish we hadn’t done it but the reality is, I know we did the right thing. I know she wouldn’t still be alive right now, I know she would have experienced pain and a losing battle. I would do the same again, to keep her safe.
Sharing this is the hardest thing to do. It’s a taboo within a taboo. I had someone I could talk to who had been through the same thing but I know many now, who didn't. I respect whatever decision parents make in a situation like this because every situation and every person IS so different and a situation like this is just so impossible, whatever you do. Whether you carry on with your pregnancy, I respect you for the strength it takes. If you interrupt the pregnancy, I respect you for the strength that takes. There truly is no right or wrong answer so instead we made the choice that made the most sense to us. I don't judge as we do what have to do to live and tell ourselves what we do to cope.
I needed reassurance when I was struggling with this so if you are reading this because you’ve found yourself in this position, know that you ARE doing the right thing. You are doing the right thing for you and your family, whatever that choice may be. If you did as we did, know that you are choosing the pain over your baby having it and that is an incredibly selfless act of love. I haven’t learnt to forgive myself for this guilt yet. For the guilt of my body doing this to Holly and the guilt of what we had to do but I will. I will and so will you. Trust in the decision you made at the time as it’s the only thing you had then. Trust that your baby only knew love and your pain stops them from ever feeling it. Trust that you are not alone and that I am with you. Your reasons are VALID, your love is VALID and your grief is VALID.
Just keep going, the forgiveness will come.
On the 7th September 2016 at 25 weeks gestation, Holly was born, still after a battle with complete heart block.