Your stories
2nd March 2020
February 27 2020
Article by Belfast Telegraph www.belfasttelegraph.co.uk
As she gazes adoringly at her happy youngest child, Donna Reynolds can only marvel at what little Eithne has been through in her two short years.
Diagnosed in the womb with hydrocephalus (fluid on the brain), the future was unknown and terrifying for Donna and her husband John.
Now, two years on, the Larne couple are proud of the incredible strength and resilience of their little girl who, as well as five brain surgeries, has coped with a list of other medical complications.
Today, in a moving interview, Donna is happy to offer encouragement to other parents facing a similarly devastating diagnosis - and she pays tribute to her employers and the charity Shine which have provided unwavering support.
Donna (35), a bank manager, and John (45), a photographer, have two other girls, Niamh (12) and Orlaith (4).
It was when Donna was 20 weeks' pregnant with Eithne that they first found out something was wrong.
"The scan showed she had fluid on the brain and an enlargement of the chambers of the brain," Donna explains.
"They said if she survived the birth they did not know if she would be brain damaged.
"It was heartbreaking. The rest of my pregnancy was just stress and worry. It was very difficult even to talk about and we didn't talk about it, we couldn't go there because it was too hard.
"We went in for my C-section and there was just silence. All the other couples in the hospital were so excited about giving birth, while we were terrified."
Donna says that during her pregnancy she and John did get some reassurance from Shine who have provided support ever since.
After the devastating news was broken at the 20-week scan the couple were given a leaflet on the charity and advised to contact them.
"John contacted Marie McGonnell from the charity a couple of days later - she then came to our home and sat down with us and talked us through all the possible scenarios that may happen," Donna says.
"Although Marie couldn't tell us what would happen after birth, she made us feel comfortable with the situation and we both drew inspiration and support from the visit.
"From then until now Shine has been supporting us as a family and we are so thankful to them."
After the scan, Donna was transferred to be cared for by specialists who discovered that the cause of her brain enlargement was a blockage in one of the chambers. Alarmingly, this meant that Eithne's fluid would continue to build up.
"Eithne is so resilient and doesn't let anything get to her - she just bounces back" Donna Reynolds
Donna was monitored closely throughout the remainder of the pregnancy. And when Eithne was born it was to very relieved parents who were able to spend an hour with her before she was taken to neonatal intensive care.
Eithne had an MRI scan when she was one day old to confirm she had congenital hydrocephalus. Things appeared optimistic as her neurosurgeon was initially satisfied that immediate surgery was not required on her brain.
However, other medical problems were discovered and Eithne had to have abdominal surgery when she was just nine days old - and five days after this she was able to go home for the first time.
However, she was soon back in hospital to have the first of several brain surgeries which aimed to help the drainage of fluid.
Indeed, most of Eithne's first year was taken up with regular visits to hospital for surgeries on her brain and dealing with other health issues.
She developed asthma at three months old, had to have a brace placed on her leg because her hip wasn't fitting into its socket correctly, and then in April it was discovered she had an allergy to cow's milk, eggs and peanuts.
As both parents have full-time jobs Donna was grateful that she had supportive employers who allowed her to take a career break to be with her daughter. She is not due to return to work until next month.
As a self-employed photographer, John will be at home to care for Eithne when Donna goes back to her job as a bank manager.
"In the first year I couldn't even have contemplated going to work and I feel so lucky that my employers were so supportive," Donna says.
"Even in the second half of my pregnancy when they knew about the complications, everyone in work was wonderful.
"It will be hard going back, but John will be here and he will work around Eithne. If he has to do a job when I am at work, I will take a holiday to cover. It has made such a difference that we have been able to do that and for me to know I have a stable job to go back to."
Despite everything she has been through, little Eithne is described by her mum as "the funniest, sweetest, most caring and heartfelt little girl".
Not only has Eithne taken so many hospital surgeries and procedures in her stride, but her sisters too have coped with the impact her many illnesses have had on the family.
Donna is proud of all her girls and how they have coped with the family's heartbreaking situation.
"Eithne has been through a tough couple of years and she is great, she is so resilient and doesn't let anything get to her - she just bounces back," Donna explains.
"It helps us to see how she just gets on with things. Orlaith was only two-and-a-half when Eithne was born so it was tough on her as, all of a sudden, we were in and out of hospital.
"Niamh was very good with her and she stepped up to be the big sister and tried to make sure she was okay. They are both really protective of Eithne and particularly now with her allergies they are very careful to make sure she doesn't eat anything she shouldn't.
"It's been tough on all of us but things could have been so much worse."
As for the future, little Eithne will always have to have her condition monitored.
As for her development, her parents are delighted that she is on track cognitively, although there are some delays with her mobility.
"She is able to crawl and can walk with a mobility walker for short distances while being supervised," Donna says.
"And we have been told there is a possibility she might have a learning difficulty but at the moment we are planning for a mainstream nursery and primary school.
"We will just have to wait and see what develops as we don't yet know the impact or if she will have a learning difficulty.
"With the help of our physiotherapist Ruth, Shine and medical teams at our local hospitals we look forward every day to Eithne's continued development and are blessed to have her as part of our little family and world."
Donna says that Shine has proved a lifeline to both her and John over the past two years. The couple attend a meeting with other mums and dads every couple of months and have developed a solid support network through the group.
"The charity has been amazing and even though we have been through a lot I would urge any parent facing what we had to face during our pregnancy to keep positive - you don't have to be in a dark place alone as there are people there to support you."
Shine, a charity working throughout Northern Ireland, Wales and England, is dedicated to improving the lives of people with hydrocephalus and spina bifida.
Congenital hydrocephalus affects one in every 1,000 babies born in the UK, making it the most common reason for brain surgery in children.
How Shine helps people with hydrocephalus
Shine has regular support groups for parents in Northern Ireland.
Hydrocephalus can also develop at any point in a person's life (acquired hydrocephalus) as a result of infection, haemorrhage or injury to the brain.
The condition causes fluid inside the head and spine (cerebrospinal fluid or CSF) to accumulate in the brain. Left untreated, it can lead to increased pressure on the brain and in some cases is life-threatening.
Prompt treatment is almost always required and usually involves surgery to implant a shunt - a thin tube - into the brain so that excess CSF can be diverted (normally to the abdomen) to relieve pressure on delicate brain tissues. In the UK 3,000 shunts are inserted every year.