I'm running the London marathon to support research

Both of my daughters have a special place in my heart but I can only hold my youngest, Elsie, in my arms.

Happy parents with premature baby.

By Andrew Lewis

My first daughter, Mathilde, was stillborn in March 2013. My partner, Charlotte, had a completely problem free pregnancy and there was no indication of what was to come.

Charlotte was living in Sweden and I was in London. I was going to join her around our due date but the phone call came the day before I was due to fly out.

Charlotte could barely speak but when she found the words I couldn’t believe them. ‘They must have it wrong,’ I said. ‘It’s a mistake’. Then the reality sank in, our daughter had died.

Charlotte hadn’t felt the baby move throughout the day so went to hospital. Once there, after checks and a scan they discovered our baby’s heart had stopped beating.

Stillborn babies often have to be induced but Charlotte was already in labour. It felt almost more tragic to have come so close.

I was urging her to squeeze my finger

We spent a day with Mathilde. Amid the huge sense of loss and numbness of grief we also felt pride that we’d produced this beautiful little girl. As I held her in my arms, she looked so perfect in every way.

One of my most lasting memories of that day is sitting alone with my daughter in my arms, urging her to squeeze my finger and desperately hoping there had been some kind of mistake.

For both of us, one of the most difficult things was walking out of the hospital, leaving our baby behind. It felt like we were abandoning her, it went against all the instincts of new parents and like we’d failed in our first job as a mum and dad.

A cautious kind of happiness

In October 2013 we discovered Charlotte was pregnant, we were happy but it was definitely a cautious happiness after losing Mathilde. We didn’t celebrate or plan, just took each day as it came.

At 24 weeks Charlotte was in pain and we were afraid she may be getting contractions so we went to our local hospital which, luckily for us, was St Thomas’s. The staff were incredibly understanding and, with Charlotte’s history, extremely cautious. They ran tests, including a fetal fibronectin test which check for a protein which is present when a woman’s body is preparing for delivery. Those tests confirmed that we were likely to have a premature baby and we did.

 

Elsie was born at 32 weeks. I can’t say that we were prepared for her arrival, I don’t think parents of a stillborn ever are. We hadn’t bought anything the second time around because we didn’t want to jinx it. When it came to the practical, we weren’t ready, but emotionally we had been incredibly well prepared by the amazing staff at Tommy’s.

 

All premature babies are different

We had no idea of what it meant to have a premature baby, I feared all kinds of developmental problems but the hospital made it clear that all premature babies are different and that may not necessarily be the case.

We were given all the support and information that we needed. We even had a tour of the neonatal unit that would be Elsie’s home for four weeks, just seeing the machines and tubes meant they weren’t so scary when we saw our baby in there for the first time.

Elsie’s birth was traumatic but thankfully Charlotte was staying on the antenatal ward at St Thomas’s when I got a phone call in the middle of the night to say our daughter was on the way. I walked into the birthing centre and there was blood everywhere, it was terrifying, Charlotte was bleeding heavily. She’d been rushed to theatre for an emergency C-section.

I sat there for the longest 20 minutes of my life. Then a member of staff walked in and congratulated me. I had a baby daughter.

Days and nights in hospital


 

Elsie was 1.7 kilos when she was born and spent one week in intensive neonatal care and three weeks in special neonatal care. It was an incredibly difficult time with Charlotte spending her days by our daughter’s side and me spending nights with her. When, finally, we could take her home, it was with oxygen tanks. It didn’t feel like a time of celebration, we were still so scared an anxious.

Elsie is now eight months old and, to a degree, we are still holding our breath. Being born before her due date meant Elsie was diagnosed with chronic lung disease. We have to be careful because a cold can quickly turn into a chest infection so life is restricted at the moment, but we don’t want to take any chances no matter how slim.

Elsie is so incredibly precious to us. She’s a determined little girl, not surprising considering her journey. She makes you work hard to get a laugh or a smile but they’re always more than worth it.

The research work that takes place behind the scenes is essential

I’m running the London Marathon in April for both of my daughters, and the money I raise will go to Tommy’s. We’ll never forget the support they gave us and, as such, it’s a cause I’m incredibly passionate about. Charities that focus on research can often feel forgotten, their work takes place in laboratories, behind the scenes, but that work by Tommy’s is essential and absolutely committed to saving the lives of babies like Mathilde and Elsie.

Watch Andrew's film about Elsie

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