The work Prof Alex Heazell has done has given hope to so many with this rare, devastating condition

Hannah and her husband, Darren sadly lost their son, Billy, due to an incredibly rare condition chronic histiocytic intervillositis (CHI). Hannah believes she has only gone on to have 2 more children thanks to the expertise and support of Tommy’s Rainbow Clinic at St Mary’s. Hannah lives in Manchester with her husband and 2 children Ozzy, 1 and Daisy, 3 months.

We married in 2011 and, a few years later, decided to try for a baby. Nine months later we’d just bought a house when I found out I was pregnant with Billy. I was so happy and couldn’t wait to be a mum. It was a textbook, perfect pregnancy, without even any morning sickness and seeing the little heartbeat at that 12 week scan was a lovely moment. 

I found out the gender in my first trimester and began bonding with my son and imagining raising him. I remember sitting in the garden that summer imagining having our little one in a paddling pool the following year. I was so naïve about anything going wrong. 

We were preparing the nursery 2 weeks before a scheduled C-section as he was breech. The next morning, I woke at 5am and didn’t feel right and thought I was in labour. We called the hospital who said to come in but didn’t panic, I wasn’t worried at all. I remember telling our dogs that next time we saw them we’d be bringing their brother home.

At hospital, the midwife struggled to find a heartbeat but I wasn’t concerned. I didn’t worry when they decided to do a scan but, in hindsight, the signs were all there; everyone in the room but me knew my baby had died. The sonographer said there was no heartbeat. I couldn’t believe it, I was 38 weeks. 

I thought stillbirth was due to complications in labour or a baby being poorly, I had no idea that this could happen to us at the last stage of pregnancy.

I remember every moment from the hospital following the news our baby had died like it happened in slow motion. I remember signing post mortem consent forms and just thinking how on earth did we end up here? Then we went home, to recover, grieve and try to rebuild our shattered lives. 

We’d gone from planning a christening to a funeral

That was a sunny day, incredibly sad but we managed to celebrate Billy. It was in the weeks and months after, when the messages of support and check-ins, start to fade that the real healing began. I didn’t want to leave my room, eat or shower but my husband was brilliant. He took me out for drives, then long walks which was healing for us and enabled us to talk about how we felt, about next steps. 

We were parents with no baby and had all this love but no baby to give it to.

I felt getting pregnant was the way through and we started trying a couple months after our loss. Stressed and grief-stricken, it took nearly 2 years before we’d conceive again. Every test we had failed to find a reason why it wasn’t happening which felt like another blow.

The post mortem results came back in the November and we met a lovely consultant who explained I had chronic histiocytic intervillositis (CHI), a rare condition which causes my immune system to see the placenta as a foreign body and fight it, restricting blood flow, oxygen and nutrients over time. It can cause loss in any trimester and, she explained, there was a 75-95% recurrence rate in subsequent pregnancies. But she also explained that there was a brilliant doctor at the Tommy’s clinic at St Mary’s who’d researched CHI and come up with a protocol which had led to lots of success stories. 

She told us that, once I got pregnant, he would oversee my care and it was such a relief, that someone had found a way to save these babies’ lives. We owe Prof Alex Heazell so much.

But I wasn’t getting pregnant and I was getting to the point where I didn’t feel I could give anymore. Then, in April 2020 as lockdown started, I did a test and got a faint line. 7 tests later I finally believed I was pregnant and have never felt so happy in my life, I wish I could have bottled that feeling! 

Pregnancy after loss is so difficult and knowing my own body was fighting the pregnancy was incredibly hard

The support from the doctors was reassuring but I couldn’t look too far ahead. I had a scan at six weeks then so many scans and appointments, placenta scans at Tommy’s from 17 weeks where Prof Alex explained everything so clearly, never sugar-coating but always offering hope. I was on lots of medications including steroids, vitamin D and high doses of folic acid daily but I didn’t know if it would work and I was anxious until I got to hold him in my arms. It was another scheduled C-section, like Billy, Ozzy was breech and when he arrived it didn’t feel real, sometimes it still doesn’t.

We decided to try again without really expecting it to happen but I fell pregnant with Daisy after a few months of trying. 

I found this whirlwind pregnancy mentally easier because I knew the treatment had worked for me previously.

Physically though, it was tougher and I felt quite unwell on the medication this time around as I was picking up every bug my toddler brought home as I had a suppressed immune system. I started thinking about ‘when’ not ‘if’ this baby would arrive this time. 

She did, 3 months ago and I can genuinely say that, without Tommy’s, without Prof Alex and his research, neither Ozzy or Daisy would be here in my arms. 

I’d heard of Tommy’s but never realized how much they do to bring babies here safely. Alex goes over and above to help families and the work he has done has given hope to so many with this rare, devastating condition.

To be told your own body is fighting a much-wanted pregnancy is a terrible thing. Prof Alex Heazell and Tommy’s saved the lives of both my babies. I owe them so much.

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