Katie Nolan and her partner Ciaran Delaney, a 31-year-old from Carlow, Ireland, were eagerly anticipating the birth of their daughter, whom they named Evie. The couple already has a 6-year-old daughter named Aila.
When the mother was 20 weeks pregnant, medical professionals discovered that the baby had cystic hygromas, which is a collection of fluid-filled cysts. The baby was delivered via caesarean section in December of the previous year, and prior to the birth, the parents were given a warning to expect the worst. This was due to the fact that the cysts were obstructing Evie’s airway, causing her to have difficulty breathing independently.
The young girl was able to pull through after enduring a half-year stay in the medical facility and undergoing a procedure to create an opening in her respiratory system.
Evie’s ailment impacts around one percent of infants that are born in the United Kingdom. This disorder transpires when the lymphatic vessels fail to develop properly during the initial stages of pregnancy.
When little Evie came into the world, she required the assistance of a massive medical team comprised of 37 individuals from three different hospitals. This dedicated group used a unique technique to help deliver Evie safely, as she was experiencing breathing complications upon her arrival.
Evie’s ability to breathe would have been hindered if the umbilical cord was severed. To counteract this, she was provided with a tracheostomy, which is a man-made passage for air to enter the lungs.
Katie and Ciaran reminisced about the time they discovered Katie’s pregnancy following their honeymoon. They were overjoyed with the news at first, but things took a turn for the worse when they received the diagnosis of cystic hygroma. This was unfamiliar territory for them, and understandably, they were deeply saddened by the news. The medical professionals advised them to brace themselves for the worst and warned them to prepare their daughter Aila as well.
Luckily, the young girl beat the odds and survived. The parents faced a challenge of planning for their daughter’s unique care requirements upon her return home.
Evie’s tracheostomy tube requires frequent cleaning of up to 60 times a day, along with regular bandage changes. This can be a challenging task for two people as Evie may not always tolerate the process and an extra hand is needed to ensure the tube stays in place. Any mishap or emergency must be addressed immediately since the tracheostomy tube is Evie’s only airway.
Evie is lucky to have parents who are always there for her, day and night. To make sure they don’t get too tired, a nurse comes over at night to assist them. As Evie gets older, she may be able to take care of some of her daily hygiene tasks on her own, such as removing her tube.
It’s heartbreaking to witness one’s daughter going through something like this. Infants and kids are pure and naive, and they don’t deserve to face such struggles at the beginning of their lives. However, we find solace in realizing that for our daughter Evie, this is the norm. She’s never experienced anything different, so it’s her version of normalcy.
The parents expressed their joy in having their new baby at home and also mentioned how wonderful Aila is doing as a big sister, working together with them.
Despite her condition, Evie is a very joyful baby who always manages to put a smile on everyone’s faces. Her parents, Katie and Ciaran, are seeking financial assistance to cover their expenses while they dedicate themselves to taking care of their beloved daughter permanently. To achieve this goal, they are raising funds through a GoFundMe campaign.
Sharing your experience can also serve as a means of collaborating with others and assisting fellow parents to gain knowledge about this uncommon illness.