Rachael’s story
My husband and I had been together for nearly 12 years when we eventually decided to try for our first child, and we were so excited when I was lucky enough to fall pregnant quickly in December 2022. The pregnancy went smoothly – I didn’t have any sickness, and felt full of energy, and our 12- and 20-week scans came around and were completely fine. We found out we were having a little boy, and started talking about names, buying adorable little outfits, and carefully picking out a cot and car seat. He was the first grandchild in both of our families, and everyone was so excited.
Everything went wrong for us at a private 4D ‘baby bonding’ scan at nearly 31 weeks. We went in, excited to see our little boy’s face, and the first few minutes were as we imagined as we watched him move on the screen. The sonographer began measuring his head. She seemed to be taking a long time, and we fell silent as she closely looked at his brain for what felt like an eternity. The smiles quickly left our faces as we looked at each other, wondering what was taking so long. She asked us when we’d last had a scan, and we told her our 20-week scan had been perfect. She then explained she would need to make a referral to the nearest Fetal Medicine Unit and called them there and then. She told us our son had severe ventriculomegaly but couldn’t say anything more. I started to cry, and my husband helped me back to the car, clutching a teddy with our baby’s heartbeat in and a scan photo.
The next week was a whirlwind of appointments and a rollercoaster of hope and despair. We had numerous scans and tests at the Fetal Medicine Unit. It was confirmed quickly that our baby did have severe ventriculomegaly – we spent hours googling this and trying to find positive stories. We had to wait a week for the MRI scan results which would let us know of any further problems. The wait felt like an eternity, and we walked for miles every day, talking constantly about what the results might mean and how our son’s life might look. We decided to name him Marcus. This was when I first called the ARC helpline, not really knowing what I hoped for from calling, but was met with such kindness and understanding.
Eventually the day came when we went in to receive the results, and we sat in stunned silence as the consultant read out a list of structural problems with Marcus’s brain – so many parts hadn’t formed properly, were missing or severely damaged, with some issues presenting that even the fetal medicine doctors hadn’t ever seen before. The consultant tentatively mentioned termination and I got angry. I loved my baby more than anything, how could I even contemplate ending his life, when he was kicking and wriggling away? I was 33 weeks pregnant, past the ‘danger zone’, the end was in sight! I loudly declared that I wasn’t afraid of raising a disabled child. My husband was silent throughout, perhaps grasping the severity of the situation more quickly than I did. The consultant deftly moved away from termination and arranged for us to meet a paediatric neurologist the next week.
We spent the next week talking, and confronted questions we’d never had to consider before – like what does quality of life mean, what chances are we prepared to take with our son’s future… Our view was that if our son had a chance to experience love, joy and comfort, then that would be enough, and we’d do everything we could to bring him into the world and give him the best life possible.
The next appointment came, and the neurologist calmly and slowly began to describe the life Marcus would have – there was a very high chance he wouldn’t walk or talk, he probably wouldn’t ever recognise us, his cognitive functioning would be similar to that of a baby or toddler for however long he lived, he wouldn’t feed or swallow, he’d have seizures which may not be treatable… the list continued, with each prognosis feeling like a punch in the gut. The consultant gently pointed out that they couldn’t predict Marcus’s likely life expectancy, and confirmed he’d suffer pain. The doctors left the room and my husband and I held each other as we cried. It was immediately clear to us that we couldn’t subject our much-loved little boy to this life, largely spent in a hospital for however long or short his time may be. We made the heart-breaking ‘decision’ to end his life before his pain could begin. We couldn’t give him a life without significant pain and suffering every single day, that wasn’t in our power, but we could give him peace, and that is what we chose – although it never really felt like a ‘choice’.
The next few weeks passed in a horrendous blur. The last night of feeling him kick, both of us cradling my stomach. At over 34 weeks pregnant, signing the forms to allow the doctors to stop his heart, me begging them to tell me that this was all a horrible mistake. The consultant kindly telling us that we’d acted out of love, and most parents would do the same in our position. Clutching my husband’s hand during the procedure, as we talked about how much we loved him. The midwife, with tears in her eyes, kindly patting my forehead with cold towels when I thought I’d pass out. Crying in pure agony as the consultant confirmed his heart had stopped. Going home, still with a bump but knowing I’d never feel him move again. Dismantling the crib and packing up his baby clothes. Going back to the hospital and being induced, and eventually giving birth to a baby I knew would never cry. Asking the delivery midwives whether he was really dead through my tears. Cradling his little body in the hospital and telling him we loved him. Leaving the hospital, clutching a memory box instead of a car seat. Picking out a tiny coffin, choosing funeral songs. Carrying his coffin into the crematorium. Listening to my husband read a letter we had written Marcus. Collecting his ashes.
The pain is like nothing we’ve ever felt before. Family and friends initially rallied, and the house was full of cards and flowers, but as the weeks and months passed, people checked in less. We were left with an empty house and enduring pain, and a sense that no one could really understand what we were going through, nor did they want to try – why would anyone want to truly empathise, to imagine the hell we had been through? It really is a very lonely place to be. A couple of ‘friends’ casually said that they could never have made the ‘decision’ we made, but they are lucky they’ve never found themselves in a position where they need to ‘choose’ between a TFMR or their child suffering greatly.
I went to some very dark places in the weeks and months after losing Marcus. Triggers are everywhere, from bumping into parents from NCT, to the nursery we’d chosen calling us to arrange a tour, to close friends joyfully announcing the birth of their healthy babies, to close family members announcing their straightforward and uncomplicated pregnancies, to seeing countless prams seemingly every time we built up the strength to leave the house… I’d cry every day, wondering why us, why our baby? What did we do wrong?
We found out that Marcus had a mutation of a key gene in his brain which had stopped it from forming properly and were given a 1 in 100 chance of reoccurrence. I got pregnant again quickly, the aching desire to hold a living baby and give Marcus a sibling only slightly outweighed the sheer terror I felt at another pregnancy. As I write this, I’m 26 weeks pregnant with our rainbow baby. It has been indescribably difficult – I’ve lost count of the number of scans we’ve had to look at this baby’s brain, each scan bringing a new round of triggering flashbacks. We were lucky enough to have genetic testing which showed this baby doesn’t have the same condition Marcus had. The wait for the results was one of the hardest things we’ve ever done – will we be bringing home a baby or another memory box?
The anxiety and trauma are still so strong. So is the fear that we are ‘replacing’ Marcus with this baby, and the knowledge that this baby won’t make things better – rather, she’ll give us a reason to fight on through the pain each day.
ARC has been a lifeline throughout, and I don’t know where we’d be without them. From my first tearful call to the helpline to supporting me through this pregnancy, they have been so understanding and just ‘get’ it. The forum and meet-ups have made us feel less alone and helped us navigate this new life we’ve found ourselves in.
I know that we have taken on a lifetime of pain so that our little boy never had to experience any pain and knew only our love and protection. There are still days when that pain feels unbearable, but I’m optimistic that there will be days when the pain feels lighter, and we are able to experience joy alongside it. We will never forget our first child and will continue to talk about our love for Marcus every day. If sharing our story can make even one person feel less alone, then that will be a fitting legacy for him.