Latchford mum raising CDH awareness after daughter’s battle

Ayla Cebelieu was diagnosed with congenital diaphragmatic hernia (CDH) at her mother Lindsey Cebelieu’s 20-week scan.

The rare birth defect, which affects one in 2,500 babies and has a 50 per cent survival rate, sees a child born with a hole in the diaphragm muscle which separates the chest and abdomen and aids breathing.

This can see abdominal organs move up into the chest cavity, squashing a baby’s lungs and stopping them from developing properly before birth.

The cause of CDH is unknown, however it occurs very early in pregnancy, at around six to eight weeks, when a baby’s diaphragm is developing.

Lindsey is sharing her daughter’s incredible story to raise awareness of the condition and promote the charity CDH International ahead of International CDH Awareness Day on April 19.

“We discovered Ayla had CDH at my 20-week scan when the nurse was having difficulty finding her heart, as the stomach was blocking it,” said the mum from Latchford.

“The scan had taken a really long time, I was on my own with my two-year-old son and we were running late for our bus, so I did not properly speak to anyone about it before I left.

“The nurse had mentioned CDH and I ended up Googling it on the bus home. It was devastating.

Ayla was diagnosed with congenital diaphragmatic hernia before she was born

“Ayla’s condition was very severe as soon as she was born at Liverpool Women’s Hospital, and she was sedated, paralysed and intubated.

“I saw her briefly for 10 seconds, and after that it was six or so hours before we saw her again. Her condition was critical, she was not doing well and we were told to prepare for the worst.”

As soon as doctors got her as stable as possible, Ayla was transferred to Alder Hey, with ‘very scary and tense’ hours, days and weeks to follow for mum Lindsey and dad Alarig.

She maxed out every drug, treatment available and was not improving her condition and it was decided that she needed to go on ECMO at one week old – basically a heart and lung bypass.

“It was a very risky treatment, and there was a chance she would not survive the surgery needed to put her on it, but it was the last option available to her,” Lindsey explained.

“If she did not improve on this, there was nothing else that could be done, and after a week, she was not really showing any improvement.

“They got her as stable as physically possible and decided to perform her repair surgery, which was again very risky due to the risk of blood clots, and we were again told to prepare for the worst.

“Fortunately, she made it through, and slowly, with lots of setbacks along the way, she started to improve.”

At five weeks and one day old, Ayla was extubated and Lindsey got to have her first proper hold of her baby. She was in hospital for three months before she could finally bring her home.

Ayla spent her first three months in hospital before she could come home

Since then, Ayla has had two additional repair surgeries and a few hospital admissions because of colds, because her lungs are so underdeveloped and her body works a lot harder when dealing with viruses, but she managed to come home having learnt to breast feed and breathe on her own.

“To look at her now, you would not know anything was wrong. She is a feisty, funny and energetic two-year-old who loves PAW Patrol, Frozen and dancing,” Lindsey continued.

“We try to treat her as normally as possible, but we just have to be vigilant.

“CDH is as common as spina bifida and cystic fibrosis, but nobody has ever heard of it.

“These babies need help, and that will only come from research, which only comes from money, which only comes from awareness.

“There is currently no known cause for CDH, and babies, toddlers, children and adults are dying from this every day.

“The charity CDH International is not-for-profit and raises money for CDH research and helping families affected by it.

“I only really discovered its work after Ayla’s birth, but I have found the forums really helpful.”

To learn more about the work of the charity or to donate, visit cdhi.org