Tommy’s rainbow clinic brought light into our lives after baby loss

Claire and Harry from London were heartbroken when their first baby Jacob was stillborn due to placenta problems, but with specialist care and support from Prof Heazell’s team in Manchester they welcomed rainbow baby Oliver last year.

When I quickly fell pregnant with our first baby, I’ll never forget the feeling of sheer joy. I still have the positive pregnancy test today, sitting with Jacob’s box of memories, reminding me of a time filled with optimism and intense love.

We were naïve to the realities of baby loss, believing that after 12 weeks you were safe – although, strangely, I’d always doubted my ability to carry a baby. My health had been up and down, but we couldn’t put a finger on it; as Jacob’s pregnancy went on, that inkling became reality.

Bad news at the 20-week scan

After seeing our bouncing happy little baby on that first scan, we took off on a babymoon to Prague, full of love and anticipation for our family’s future. But at 20 weeks, the sonographers fell quiet. They’d spotted a major problem with Jacob’s heart, and eventually he was diagnosed with transposition of his great arteries. After invasive tests of the amniotic fluid - which, to our relief, came back clear - we had to prepare ourselves for our son needing heart surgery after birth and then living with a major heart condition.

The hope and happiness we’d revelled in quickly morphed into gut-wrenching worry for our little boy’s future.

The scan also found that Jacob was measuring a bit small, but it wasn’t until 28 weeks that we saw his severe growth restriction. A problem with the placenta meant Jacob’s blood was only circulating around his vital organs. A whirlwind of awful events exploded: doctors and nurses descended on us, saying Jacob’s heart was faltering and I needed an immediate C-section to save his life.

Shaking like a leaf, I agreed to everything, with no time to process what was happening. It’s difficult to put into words just how traumatic this was. We hadn’t felt well cared for at our local hospital so were relieved to be transferred to St Thomas’, where they have premature birth experts.

Ending the pregnancy and grieving our baby

A specialist doctor explained there was only a 10% chance Jacob would survive, and he’d have severe disabilities if he did. I cried as this information sank in. We could never knowingly commit our child to a life of pain and suffering, so we had to make the earth-shattering decision to let our baby go – our beloved, beautiful, precious baby. My heart breaks again writing this.

The moments that followed are etched into my mind like scars.

The termination, and the moment his heart stopped beating, like a dagger through my heart. Trying to remain strong through the birth, bursting into floods of tears when he arrived still and cold. Meeting him for the first time and seeing his beautiful features; his fully formed hands, feet and nails. 

Having to leave him at the hospital - our baby, who should never be away from us - and going home with empty arms and broken hearts. Having to register his stillbirth in the same place as families registering the birth of their living babies, and seeing parents holding their rosy-cheeked bundles, was very triggering. 

Seeing his tiny coffin in the back of the hearse and knowing that my baby was in there, forever beyond my reach, while I longed to hold him with every inch of my being. Picking up his ashes, which remain with us in our home. 

Searching for answers and support

I’ll never forget the kindness with which the neonatal doctor treated us, and we had a wonderfully caring bereavement midwife who was there for us in the early days, but in the months after our loss I suffered with depression. Looking back, I needed counselling, but our hospital couldn’t provide it and I didn’t feel able to reach out for help anywhere else. 

The trauma from losing Jacob sent me into my shell; I felt stripped of my confidence and ability to communicate. 

I found myself searching for answers as to why our baby died – and blaming myself. Was it because I went running in early pregnancy, or took malaria tablets a couple of weeks before we conceived? A few months after losing Jacob, our post-mortem provided the answers I so desperately needed.

I was diagnosed with Chronic Histiocytic Intervillositis (CHI), a very rare disorder where the body’s immune system attacks the placenta, endangering the baby. Doctors said it would probably come back in future pregnancies if left untreated, but with medication we should be able to have a healthy baby. Blood tests also found I have Anti-Phospholipid Syndrome (APS), a blood clotting condition that can cause pregnancy complications.

Online research led me to a Facebook group for 500 women around the world with CHI, which I’ve turned to many times for guidance and support. The group also led me to Professor Alex Heazell, who runs Tommy’s Stillbirth Research Centre and their incredible Rainbow Clinic in Manchester. He’s an outstanding, compassionate doctor, changing the lives of families torn apart by baby loss and undertaking crucial research into CHI.

Pregnancy after loss in the pandemic

Pregnancy after loss was terrifying and not a decision we made lightly. We both knew the medication might not work and we could lose this baby too – but we also knew that we couldn’t go on without trying. We felt Jacob’s absence so deeply that our world was devoid of all hope and light. I didn’t think I’d ever feel happiness again. 

When we got pregnant again, we followed a special treatment plan developed by Prof Heazell, to suppress my immune system and stop my blood from clotting so I could carry the baby safely. Living so far away from his Manchester clinic, we saw a specialist high-risk pregnancy team at UCLH. 

We lived from scan to scan, anxiously waiting to hear if there was any sign of CHI returning and whether our baby was okay. 

Every step of the way, I was reliving my pregnancy with Jacob, and scans were big hurdles as they’d created such devastation before. I found myself emotionally distancing myself from our growing baby, desperate to avoid more heartbreak. 

Alongside the stress of pregnancy after loss, and the fear of CHI, I had the Covid-19 pandemic to deal with! My immune issues meant I had to be careful, so Prof Heazell helped us make home-working arrangements before lockdown, and from 16 weeks I only left the house for daily walks or antenatal appointments.

Given our history, it was very difficult not being able to have Harry in hospital with me. Luckily, I had outstanding personalised care from our UCLH consultant Dr Melissa Whitten, and online counselling from CPCP to help me through it.

Parenting after loss 

When we nervously passed the stage that we lost Jacob (29+1), I finally started to believe, and we somehow made it all the way to 38+2! Our rainbow Oliver Francis has brought light back into my world, pieced my shattered heart together, and given me hope again. I often hold him in my arms, look to the sky with tear-strewn eyes and whisper ‘thank you’. He’s truly a miracle.

Despite the joy Oliver brought, my anxiety continued beyond pregnancy – particularly in the early months, when we were sleep deprived. I was so concerned about SIDS I had a breathing monitor for peace of mind, and woke in the night having panic attacks, terrified he was trapped under the covers or had stopped breathing.

Our happiness around Oliver also co-exists with our grief for Jacob. We’ve planted a tree for Jacob in a park near our home, a chance for Jacob’s spirit to grow with us in this world. On each anniversary of his birth, we dedicate our time to remembering Jacob with Oliver. 

Jacob is always present in our lives and Oliver will grow up knowing he has a brave big brother in the stars.

I hope one day we’ll have the strength to try this testing journey again, so Oliver can have a living brother or sister. Until that day, we thank the Rainbow Clinic for the incredible support you gave us to have our miracle son. Tommy’s literally brought light and happiness back into our lives.