I need to start by saying thank you to everyone on this forum who has been brave enough to share their stories before me. I have always wanted to speak about my experience with others but have never really had the opportunity and it’s often difficult to know where to begin. I think this Network will be really beneficial to anyone who may be suffering in silence and I hope that people can find comfort in reading the experiences of others. You are not alone and please feel free to reach out to me.
Our journey with infertility and miscarriage has been difficult and I found that I’ve adapted the way I’ve approached each loss. It’s still difficult for me when I see pregnancy posts on Social Media and feel guilty when I can’t immediately be happy for them. I've tried to be strong for my wife and family and carry on but the thoughts of our losses are never far away. I’m still not sure I’ve found the right way, or if there even is a right way to deal with things but I thought letting others know our story might help.
We were keen to bring a new generation into the world and after finally settling in to our new home, began this journey together. My partner has irregular cycles and we didn’t want to put too much pressure on ourselves to begin with so did not track the cycles. It was only when she began having severe cramps and bleeding did we realise that something may have happened. After contacting we were advised that due to the timing and contents this was an early pregnancy loss – likely 6 weeks. To hear that our family might have grown and to know that we were losing a baby was a sucker punch of joy and sorrow.
After our first miscarriage we were keenly aware of our next pregnancy and became at once excited and nervous (we had just begun consultation with a fertility clinic in London and to our surprise were already pregnant). We decided to wait as long as possible to tell close family and got them custom bibs to announce it. We were all over the moon and began planning where things might go in the house, with smiles constantly on our faces. Sadly just before the 12 week scan there was a bit of spotting and it was confirmed via. ultrasound that our baby’s heart stopped beating just before 11 weeks. This was a massive blow to us all and became more and more devastating as we had to break the news to our family. My mom was especially upset by the news and burst into tears as soon as she came to our door and to this day we still have the vase that my dad sent us with flowers in.
Our third pregnancy, while not a miscarriage, was still traumatic and emotional. This was where we started to get some answers about our previous pregnancies. Having experienced pregnancy losses before, we found ourselves trying not to get too excited in an effort to lessen the blow of another loss. I found myself feeling a little guilty doing this – other couples celebrate openly how excited they are of their new arrival, preparing for new life and here we were holding it in as if our baby wasn’t worthy of celebrating… (I know this was probably best for our mental wellbeing in the first trimester but I still had those feelings of guilt).
Into the second trimester we allowed ourselves to get more excited, happily telling our family and friends the news and starting the long to do list to prepare the house. We were finally experiencing the pregnancies that other couples were – full of pride and anticipation. It was at our routine scan that these feelings came crashing down. Usually full of conversation and jokes, the sonographer stopped talking to us and tilted the screen away from us. She then let us know she was going to get another colleague to check a couple of things. “I’m afraid that the ventricles in baby’s brain are showing up slightly larger than we expect at this stage”… “Fluid on the brain”… “Bleed in Utero”… The next few hours were a blur as we were ushered into a side room with sofas and tissues. The Fetal Medicine Specialist and a Specialist Midwife sat down with us to review what was happening and our options. We were devastated to learn that our baby had suffered a brain haemorrhage in utero and this was causing fluid to build up in the ventricles. We tried to stay strong and take in everything that they were saying so that we could understand but found that their words didn’t sound right. As I held my wife, both of us in tears, they said the likely result would be permanent disability with limitations on our baby’s development, and it was unknown if they would be able to walk. The room fell silent as they said that termination is an option due to our circumstances and that they would let us talk about it in private. We waited for the other to speak first and we were relieved that we were both of us were on the same page - we were going to continue with our pregnancy and give our baby as many opportunities as we can. On reflection the medical team was legally obliged to offer us termination but when you hear those words spoken, I felt overwhelmed with so much pain, sorrow, anger and frustration. The Specialists fully supported our decision and answered all the questions we had and we left the hospital… changed.
While hearing the news was difficult enough, calling our close family to explain what had happened was gut-wrenching. My mom insisted on coming over that evening and while I had shed tears earlier, I broke down completely when I saw her face. Over the phone I could hear my Dad trying to keep his voice strong and supportive, only to begin crying when he heard we had been offered a termination. He said sorry and that he would call back in a bit and hung up the call. I can’t remember hearing my Dad cry before…
This was three days before our baby shower. We considered cancelling this in light of what we had learned but after speaking to each other we wanted to celebrate our baby as much as possible. It was good to be surrounded by our friends and family and gave us renewed hope that we would have the support we needed. We didn’t tell anybody other than close family at this time, not wanting to spread our pain to others.
While we supported each other at home, when we returned to work things became a bit unmanageable. I didn’t remember most of the drive to work and when there I couldn’t focus. I felt obliged to tell my line manager, but couldn’t find the words to explain it properly and had to excuse myself for a walk. I began to research diagnoses and outcomes during my lunch break and often chose to walk out to eat lunch on the side of a country lane rather than in the office. I eventually confided with a colleague who had been very supportive and found that he had also experienced pregnancy losses and infertility and that his twins were from IVF treatment. After a few lunches speaking about our experiences (thankfully we were assigned the same project to work on together), I found slight relief in talking about it with someone outside the family. Work became manageable again.
We were back to counting the weeks rather than enjoying the pregnancy, hoping and praying that no more hurt would come to our baby (I hadn’t prayed in a while and found myself in the garage every evening praying for answers or peace…). Knowing that our baby, a piece of us, might be in pain right now and there was nothing we could do about it left us feeling helpless and defeated.
Many sleepless nights later, I was at work when I received the call that my wife was in the hospital and that they needed to deliver the baby by C-Section now – we were not told of any delivery plans before this and had I known I wouldn’t have gone to survey a building 3 hours away. I stayed on the phone with her and after a hectic drive there, I was scrubbed in and we joined the waiting list for Emergency Caesareans. To this day I can’t be more proud of how brave my wife was as, despite trembling with fear, did so well in her first Surgery ever. Our newborn baby was immediately wheeled away to the Neonatal Intensive Care Unit, and I was given the horrible choice between following the Crib down the corridor or staying with my wife holding her hand. Thankfully we agreed that we wanted someone to be there at all times so I left her to be stitched up and followed them into the NICU.
The next few weeks were exhausting for both of us, as our baby had to have a series of Blood Transfusions and an IVIG Transfusion to prevent any more bleeds to the brain. Thankfully although Brain Surgery was considered by the Surgical Team, ultimately the Hydrocephalus resolved in the first few months. Our rainbow baby was safely here, and while slightly delayed in development and severely sight impaired is always loved and happy– a blessing to our family.
Our most recent pregnancy loss was earlier this year and I found this to be the most difficult personally. We had pre-pregnancy consultations about how our mismatching platelets could be medically managed with weekly infusions and knowing that science would be behind us this time gave us the confidence to try for another baby. While we were apprehensive, the increased amount of scans reassured us as the weeks went by. Finally conversations began about redecorating and saving for more baby things, and announced our news to close family and friends. To our dismay, a few weeks later at 10 weeks, the Fetal Medicine Specialist who saved our baby’s life before fell silent as he scanned. With a calming tone he explained that our baby had a heartbeat and was growing well but the skull was not as thick as he would expect at this stage and asked if we could come back for another scan next week.
Trying to understand what this meant I scoured the internet, looking for any information about this new situation and looking for hope that our baby was ok. The week in between scans was filled with brief moments of hope as we tried to prepare ourselves for the worst. At this point I was in a new job and my team were incredibly supportive. I didn’t want to hide what was happening any more so became much more open in speaking to people about it, which helped slightly.
The following scan itself went really quick, as he knew exactly what he was looking for. Sadly it was confirmed that not only was our baby’s skull not forming, but there was a mass of fluid in the neck. We were once again taken to the same room with sofas and tissues where the news was previously given to us about our baby’s bleed to explain what our options were.
I don’t think I can say exactly how I felt when I was hearing what they were saying, as while we were expecting bad news I don’t think we prepared fully for the conversations that we needed to have. They told us that in cases of Acrania-Anencephaly, it was likely that we would naturally miscarry in the second trimester as the exposed brain would be exposed by the amniotic fluid, but the best case scenario would be that our baby might live for a few days and would be given palliative (end of life) care until they passed. Having not considered termination at any point before this, hearing the fact that our baby would be given pain relief for their entire life was devastating. It is still the most difficult decision we have made together but we could not stomach knowing that our baby might suffer. This was followed by discussions about a Post-Mortem, whether we would like to see our baby afterwards, the choice of cremation or donating to Medical Science and if we would like to participate in a joint memorial service alongside other families in the hospital. To say this was overwhelming would be an understatement.
After a further few days of waiting we were admitted into a side-room and the process began. I am so proud of my wife and how strong she was throughout. We decided in the end to see our baby and are grateful that we did. While our baby’s head was flat on top where you would expect to see a skull, they were perfect. Tiny arms and tiny finger, tiny ribs, tiny eyes and ears starting to form. Our Perfect Baby. Wriggling on the monitor only days before - now still and at peace. We held each other proudly and said our tearful goodbyes as our baby was taken away. The decisions we made still give us sleepless nights, but we take comfort knowing that our family stand behind us in acting how we thought was best for our baby. We are still waiting for the Post-Mortem of our Baby, hoping for some answers.
I’d like to again thank everyone who have shared their experiences before and also to Chris for creating this support network and the tagline 'It's OK not to be OK' really resonates with me. While I’m fortunate to have great support from my family, this is the first time I’ve written down exactly what has happened with our three pregnancy losses and miracle rainbow baby. I hope some of you can find comfort in my experience. Your stories have given me the confidence to tell ours.
Thanks Chris - all our thoughts are with you and your wife during this difficult time as well. Its inspiring to see you build something out of your grief to support others in theirs.
I also felt like I was pestering my wife too much asking how she was all the time - I think its the knowledge that its their bodies that have gone through this terrible experience that makes us constantly want to check in with them. Its difficult finding the right balance between giving each other space to grieve and giving emotional support.
I'm looking forward to seeing how the website develops - I've found reading about other experiences really empowering and think this will be a really powerful resource.
Afternoon Tom, My deepest condolences go out to you and your wife on your pregnancy losses. Thank you for sharing your story with us. It must have taken a lot to share that. I can fully resonate with the work issues. I was the same. I tried my best to focus and concentrate and I just couldn’t. I found myself the same. I can also resonate when happiness turns to sorrow and having to express to family and friends what was happening. The website was built out of this. I needed something on a night time to focus on other than my wife, she was always the number 1 priority, but I probably became overbearing asking my wife, if she was ok? Did she need anything? So I had to focus on something. I hope you have found the website somewhat useful, we have some big plans moving forward. Chris