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“I’m proud to say that my daughter was never alone through this traumatic ordeal because I was able to stay at The Sick Children’s Trusts’ accommodation’”

News   •   Aug 13, 2015 14:45 BST

During what was meant to be a routine 21 week scan, we were devastated to be told that our unborn daughter, Molly, had a life-threatening condition which meant she only had a 50% chance of survival.

Doctors discovered that Molly’s lungs weren’t growing properly because she had a hole in her diaphragm which meant her organs were moving to her chest. We were really frightened that her congenital diaphragmatic hernia (CDH), would mean she wouldn’t survive, but we tried to stay positive and hope for the best, but deep down we knew we also had to think about preparing ourselves for the worst.

Thankfully, on 26th March 2015, Molly came into the world weighing 6lb 12oz, but unlike most mothers I didn’t get the chance to spend any time with my new baby. Molly was immediately rushed into the Royal Victoria Infirmary’s Paediatric Intensive Care Unit (PICU) where doctors were waiting for her. She was put on an oscillator and other life support machines to try and stabilise her while we were faced with the agonising wait before she could undergo surgery to fix the hole in her diaphragm.

At three days old, Molly had already had more of a complicated life than most, and she started showing signs of deterioration. Doctors explained to us that because of her hernia, Molly’s little body was trying to help itself, but was working too hard which caused heart and lung hypertension. To give her extra support, the doctors decided she would need to be supported by an ECMO - a life support machine that would deliver oxygen into her blood. It wasn’t without its risks but it was the only option we had left to try and keep her alive.

So Molly was rushed in an ambulance to the Freeman where she was put on the ECMO and received further treatment but we were distraught with the doctors’ prognosis - she was given only a 10% chance of survival.

At this point we were given the choice to switch off her life support machine.

There was no chance that I was going to give up on my little girl. Even if she had little chance of survival.

Molly's Dad, and my Mum and I, sat beside Molly in the PICU every single day and night- willing her on and praying she would make it through.

Being able to stay by her side was only possible because of The Sick Children’s Trust, who gave us a room in Scott House, a ‘Home from Home’ within the hospital grounds. Even though she had her eyes shut all the time, we read to her, sang to her, held her hand and talked to her, telling her she was going to come home, to where she belonged.

Surgeons rarely operate on babies with CDH who are on ECMO because the risk is exceptionally high, but Molly underwent the surgery and against all the odds came out of it safely. I couldn't have felt prouder of my baby girl.

We began to become more hopeful when Molly started to improve and make steady progress. She was even transferred back to the Royal Victoria Infirmary (RVI) and was then moved out of PICU onto the respiratory ward. At this point we moved in to Crawford House so we could continue to be with her, but it was also somewhere for us to escape to when we needed sleep or just to get away from the ward when it became too much.

After this initial improvement, Molly then faced a number of setbacks including a feed intolerance, a chest infection and a build-up of fluid on her brain, for which she needed to be fitted with a shunt to drain the fluid from her head into her stomach.

Doctors were once again impressed with her progress and began discussing the future for the first time. We were finally able to think about her coming home and what this would entail – from learning how to feed her through a tube to giving her medication.

But Molly was to face one final step back before she could come home. Doctors began to notice that she was acting differently and her head had become swollen. She was rushed to theatre and had to undergo another operation because her shunt had become blocked.

Two weeks later Molly was finally well enough to come home. There are no words for the relief we felt.

This experience has taught me to never give up hope. Molly fought against everything that was thrown at her and I feel like my little girl has shown me that anything is possible. It is impossibly hard watching your child go through something like this, and some days I would be too scared to walk through the hospital doors because I wouldn’t know whether it was going to be a good day or bad day.

But you have to try and stay strong and have hope that your child will make it through. Surround them with love and hold their hand because they can hear you and they know you’re with them; I believe where there's great love there will always be great miracles.

Molly still has her bad days where she’s in and out of hospital but she’s been through the worst part now. After all the obstacles she has faced, it feels too good to be true that she’s home. I’m proud to say that my daughter was never alone through this traumatic ordeal because I was able to stay at The Sick Children’s Trusts’ accommodation at both Scott House and Crawford House. The staff at the houses are some of the nicest, kindest and most supportive people I’ve ever met. They made me feel at home and gave me a shoulder to cry on and were there when I needed someone to talk to. Thank you for being there for us during our hardest days.

Elisha Bamborough, Molly’s Mother.

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