FORENSIC science student Stephanie McKittrick found out she was pregnant with her second child in August 2011.
Initially she put her ill health down to “the usual morning sickness” and continued on with life – which at that time was moving home and starting a college course studying forensic science.
The 28-year-old said “things were looking good”.
But when the 20-week scan arrived everything changed.
“The scan was going really well, we were all having a laugh until a midwife looking in on the scan said ‘what’s that?’,” said Stephanie.
“They brought in several more doctors and midwives and told me: “I’m sorry to tell you this but the scan is not normal and we need you to see a foetal medicine specialist. I still remember the feeling, it was like I had been punched in the stomach.”
The east Belfast woman said a consultant gave her a diagnosis of CDH (Congenital Diaphragmatic Hernia).
“This is when part or all of the baby’s diaphragm doesn’t form allowing organs from the abdomen to migrate into the chest cavity, compressing the heart and lungs,” explains Stephanie.
“The survival rate with CDH is 50 per cent. My baby girl had a right-sided hernia which only 10 per cent of CDH babies have. So they suggested I have an Amniocentesis (a diagnostic test carried out during pregnancy which can assess whether the unborn baby could develop, or has developed, an abnormality or serious health condition).
“No information leaflets were available at the time. So I went home and did what everyone does – I Googled the condition, which is the worst thing you can possibly do. All I was able to find were stories of little babies that had lost their battle with CDH and I was a complete emotional wreck, I just could not believe this was happening. I then found a UK registered charity, CDH UK and rang their helpline immediately. Then I spoke to a lovely women called Brenda who was able to give me more information and calm me down a bit.”
Things were to get even worse for Stephanie after finding out about her baby. After several trips to the hospital with unexplained symptoms including “feeling dizzy, disorientated and very very sick”, she was referred to a neurologist.
“After several scans and tests they told me that I had Hydrocephalus, which is fluid on the brain and I was admitted to hospital,” she said. “They were unable to operate on me as I was pregnant. I met with specialists who suggested delivering early but that was not a possibility. I wanted to give my wee girl the best chance.”
In a bid to ease her condition, Stephanie was taken into theatre, where three holes were drilled in her head and probes inserted in the holes.
“This was an awful experience as I was completely awake,” said Stephanie. “The two days I was connected to the laptop via the probes were terrible, I was so ill, no medication was helping me and I was constantly panicking that my constant retching and inability to eat would further harm my baby.”
Then at 37 weeks Stephanie was rushed back to hospital when her waters broke.
“I had to have a Caesarean (section) as they could not risk her becoming distressed. She was 6lbs 4oz. I was taken up to meet her for a few minutes and then brought back down because they needed to do more tests. Then at 1am the doctor came to me and said, ‘you need to think about getting her baptised as she is very ill and might not make the night’.”
The baby was christened Layla Mary McKittrick.
“I sat with her through the night, all the machines beeping and doctors doing constant tests,” Stephanie recalled.
“At 7am they (the medical staff) came to me and said that they had been working through the night, tried everything and she was still deteriorating. The consultant told me I could either make the decision to turn off her life support and spend whatever time she had left with her, or I could keep her on the machines and she might survive another two days at the most, but there was no way possible that she would survive or get strong enough for an operation.
“I decided it was better to turn off the life support, end her suffering and love her as much as I could in the time I had left.”
Stephanie and her loved ones were set up in a private room to spend their last moments with Layla.
“My elder daughter Lexie was brought down briefly so that when she’s old enough to understand we can tell her she met her little sister,” said Stephanie.
“We took as many photos as we could and we noticed that every time we kissed her, she opened her wee eyes. It was her way of letting us know that she knew she was loved.”
Baby Layla was born on April 29, 2012 and she died the following day.
Stephanie said her funeral was a “celebration”, during which they released 25 balloons, one for each hour she was alive and five white doves.
Six weeks later Stephanie was admitted to hospital for emergency brain surgery.
Now she is working endlessly to spread awareness on CDH.
“I made a video from photos of her day and telling her story and put it out on Facebook for all to see,” she said.
“I hand-delivered CDH information leaflets to the Royal Maternity Hospital, I organised a sponsored walk which raised over £1000 and I am organising Layla’s Butterfly Ball in Park Avenue Hotel on May 4 to raise money for CDH UK and Neo Natal Unit in the Royal Hospital.”
At the time of talking to the News Letter, Stephanie was in the Royal Victoria Hospital in Belfast waiting for an emergency MRI scan after feeling unwell with headaches and pressure behind her left eye, among other symptoms.
“There is something wrong that needs to be fixed,” she said. “That’s how it is.
“But I have to go on for my daughter. It is not about me.”
For more information about baby Layla and to donate to the cause check out ‘Layla’s legacy’ on Facebook: http://www.gofundme.com/laylaslegacy