Belfast Telegraph

Wednesday 16 April 2014

I lost my baby to a condition I never even knew existed - congenital diaphragmatic hernia

A Northern Ireland mum has described the precious hours she spent with her baby daughter who lost her fight for life at just over one-day-old.

Layla McKittrick was born with congenital diaphragmatic hernia (CDH) – the same condition that claimed the life of a baby featured on the Channel Four programme One Born Every Minute last night – and managed to survive for 25 hours.

Her mum Stephanie, from east Belfast, took the brave decision to speak out about her daughter's final hours in the hope it will raise awareness of the devastating condition.

Ms McKittrick (28), who also has a two-year-old daughter Lexie, was told her unborn baby had CDH at her 20-week scan.

Despite the bleak outlook – babies have a 50% chance of survival – Ms McKittrick said she tried to remain positive.

At 37 weeks, Ms McKittrick went into labour, and due to the CDH, she had to undergo a Caesarean section under a general anaesthetic.

"If my baby was only going to live for a few hours I wanted to be awake and be with her," she explained.

"The first thing I asked when I came around was if she was alive, and they told me she was, but was very, very sick.

"She looked completely normal but I couldn't hold her. I was able to talk to her and stroke her.

"They told me she wouldn't make it through the night so I had her baptised there and then.

"They said the bottom line was she was never going to survive and I could love her and make the decision to turn off the life support or let her fight and suffer for a few more days.

"I knew it was best to let her go. I was allowed to bring Lexie up to meet her sister and I got to hold her. They took the machines away and then everyone left so we were alone, and then she was gone.

"The days after that were very emotional. I was able to plan her funeral from my hospital bed and it was lovely. I banned anyone from wearing black, and we released 25 balloons for every hour she was alive.

"I just want to raise awareness of CDH. I had never heard of it before Layla yet it is as common as spina bifida. I want to try and raise money for research."

Background

Congenital diaphragmatic hernia (CDH) is a birth defect. Babies do not have a fully developed diaphragm, meaning that organs in the abdomen can move into the chest area, restricting the growth of the heart and lungs. Ms McKittrick has organised a charity ball on May 4 at Park Avenue Hotel in Belfast. All funds raised will go to charity CDH UK and the neo natal unit at the Royal Maternity Hospital where Layla was born. Log on to www.facebook.com/LaylasLegacy or for more information about CDH, log on to www.cdhuk.co.uk.

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