Parents often experience sleepless nights with their children. But this Lancashire mum faces constant worry as her son has a condition which means he could stop breathing. She tells NATALIE WALKER her story
As Charlotte Pickthall watches over her young son Carter Ambrose, she faces a constant worry.
The 22-year-old from Leyland cannot sleep herself as she has to be on alert in case he stops breathing during the night.
Two-year-old Carter suffers from congenial emphysema, where he has a chronic cough and struggles to breathe, as well as sleep apnoea, which also affects his breathing.
Charlotte, who is a play worker at an after school club, says: “Carter’s health was getting worse and he was diagnosed with sleep apnoea.
“I can’t sleep as my partner Jonny Ambrose and I have to watch over him through the night. It is a nightmare.
“He has to have supervision through the day too as with his congenial emphysema he has coughing attacks where he can’t breathe. We have to help him breathe with inhalers.”
Carter’s diagnosis was only a few months ago, but his health woes started before he was even born.
Charlotte and Jonny were told at the 20 week scan that their unborn son had congenital cystic adenomatoid malformation of the lung (CCAM).
Charlotte says: “Doctors said he had cysts on his lungs and we were went to St Mary’s in Manchester for our scans.
“I was told I needed to give birth there as this was the best place but at 37 weeks, doctors decided I was fine to go to Royal Preston Hospital.
“Doctors said that as CCAM was very rare, they didn’t know how he would be when he was born.
“They didn’t know if he would need operating on straight away or whether he would go in the neonatal unit.
“It was very terrifying, especially for my first pregnancy. From my 20 week scan, I could not enjoy my pregnancy.
“Luckily, Carter was fine. He was induced at 38 weeks. Doctors checked over him and he was breathing fine.
“But a scan revealed a cyst on his bottom right lung lobe.
“When Carter was just one day old we were sorting out a major lung operation to remove the anomaly.
“For a further 12 months he was consulted, scanned and inspected. We were told of all the issues that could occur during surgery which as parents we had to continue through and be strong for our boy.
“At 13 months old, Carter had lung surgery at Alder Hey lasting roughly four hours. As we suffered four hours of worry, we were well supported by the staff of Alder Hey.
“The surgery was a success. Surgeons had removed a piece of the lung.
“We though that was the last of it.
“But in December last year, we went for the results of the operation to be told that Carter had been misdiagnosed and that he had congenial emphysema.
“This broke us as this condition is life long and has already started to effect Carter.
“He has a chronic cough which will never go. There is no cure for my son, we don’t know what his health is going to be become. We just make everyday the best we can.”
Carter’s condition is very rare, affecting one in 30,000 babies.
As a result, there is no cure and Charlotte is facing trouble getting it recognised as a health problem for disability allowance.
Throughout their ordeal, Charlotte and Jonny, a nuclear engineer at JS Nuclear, in Walton Summit, have been supported by Alder Hey Children’s Hospital and they are taking part in a sponsored 1k walk in Sefton Park, Liverpool on May 6.
Charlotte adds: “During the hard time and sleepless nights we were provided with the environment, resources and love any parent would need in that time and the experience would have been much more daunting without the much needed help of Alder Hey.
“Carter continues to have check ups every six months and the money you can donate will help not only Carter but other children who need help there.
“We want to give back to the hospital. We are there all the time, so it makes sense to help them as they help other children.”
To support Carter’s parents and make a donation visit https://www.justgiving.com/fundraising/Carter-Ambrose?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=Carter-Ambrose&utm_campaign=pfp-share