Katie Nolan and her husband Ciaran Delaney, 31, of Carlow, Ireland, were looking forward to the arrival of their baby girl whom they named Evie. They have a 6-year-old daughter named Aila.
Doctors diagnosed the baby with cystic hygromas (a group of fluid-filled cysts) when she was 20 weeks pregnant.
In December of last year, before the baby was born via caesarean section, the parents were told to prepare for the worst. Evie couldn’t breathe on her own, the cysts were clogging her airway.
After spending six months in the hospital and having an opening made in her airway, the little girl managed to survive.
Evie’s disease affects one percent of babies born in the UK. The condition occurs when the lymphatic vessels do not form correctly during the first weeks of pregnancy.
When Evie was born, she needed the help of 37 members of the medical team recruited from three different hospitals to attend to her case. They performed a special procedure used for the birth of babies who have breathing difficulties.
Evie wouldn’t be able to breathe if the umbilical cord was cut, so she was immediately given a tracheostomy, an artificial opening of the airway.
Katie and Ciaran recalled that when they found out she was pregnant after their honeymoon, they were really happy with the news.
“But after the diagnosis, we were very distressed. We had never heard of a cystic hygroma. They told us to expect the worst and to prepare our other daughter, Aila.”
Fortunately, the little girl managed to survive despite the odds. Her parents struggled to prepare on how to attend to their daughter’s special needs when they could welcome her home.
The inside of Evie’s tracheostomy tube must be cleaned up to 60 times each day, and the bandages must be changed frequently.
“It’s a stressful job for two people as Evie can’t always tolerate it, and another person is needed to help keep the tube from falling out. We have had this emergency, and we must react immediately because that is their only airway.”
Evie’s parents are dedicated to taking care of her 24 hours a day. During the night, a nurse stays at home to help them and so they can get some rest.
As Evie grows, the possibility that she can remove the tube on her own to do daily hygiene will become viable.
“Nobody wants to see their daughter have to go through something like this, babies and children are so innocent. They don’t deserve a rough start to life like this. I guess our comfort is to recognize that for Evie, it’s normal, because she hasn’t known any other way of life,” Delaney said.
Thᴇ parᴇnts commᴇntᴇd that thᴇy arᴇ happy to havᴇ thᴇir ЬaЬy at homᴇ, addinɡ that Aila is doinɡ an ᴇxcᴇllᴇnt joЬ as a Ьiɡ sistᴇr collaЬoratinɡ with thᴇm.
ᴇviᴇ is a vᴇry happy ЬaЬy, dᴇspitᴇ hᴇr condition, shᴇ always ɡivᴇs thᴇm smilᴇs. Katiᴇ and Ciaran nᴇᴇd hᴇlp to covᴇr thᴇir ᴇxpᴇnsᴇs whilᴇ thᴇy dᴇdicatᴇ thᴇmsᴇlvᴇs to takinɡ carᴇ of thᴇir ЬaЬy pᴇrmanᴇntly, thᴇy arᴇ raisinɡ monᴇy throuɡh a ɡoFundMᴇ campaiɡn.
Sharinɡ your casᴇ is also a way to collaЬoratᴇ with thᴇm and hᴇlp othᴇr parᴇnts lᴇarn aЬout this rarᴇ disᴇasᴇ.
