Belfast Telegraph Baby Hearts Appeal: Sophie is our little livewire
Sophie is an all-action three-year-old but a routine check-up when she was just a month old led to a life-or-death heart op and her parents’ longest day. Dundonald mum Caroline Reader Balkton tells Stephanie Bell how she feared her daughter would die and why she is backing our Baby Hearts Appeal to fund research into congenital cardiac disease
As she skips into nursery every morning, a little bundle of energy, there is not the slightest hint that adorable little Sophie Reader Balkton faced a mighty battle for her life shortly after birth. A real live wire, her mum Caroline (31), and dad Chris (40), can only marvel today at their three-year-old’s vitality and health.
The Dundonald couple — who also have an 11-year-old son, Josh — faced an unimaginable trauma when a routine visit to their GP with their seemingly healthy newborn daughter turned into a dash to hospital where she was immediately put into intensive care.
Sophie's congenital heart disease wasn't detected before she was born and after birth she was discharged from hospital as a normal, healthy baby. It's why the events which unfolded a couple of weeks later were such a shock for her parents who were totally unprepared for the battle that lay ahead.
Caroline explains: “I had a completely normal pregnancy. Sophie was born on February 5, 2010, and everything was fine.
“She passed all the paediatric checks in hospital and we were discharged. She even passed the midwife checks at home. When she was two weeks old, I had to take her to my local GP for a general check-up and he picked up a heart murmur.
“There was still no real alarm and I was told he would refer her to hospital for tests. When no appointment had come through for a hospital check-up in the next two weeks, I went back to the GP.
“He checked her heart and must have heard something more serious because he told me to get her to the Rapid Response Unit in the Ulster Hospital at Dundonald there and then.
“I still didn't have a clue what was happening, and I was very calm and collected as I dandered up to the hospital, not for one minute realising what lay ahead.”
On admittance to the Ulster, Sophie was immediately rushed to theatre to be sedated in preparation for a transfer by ambulance with a team of specialist staff to the Royal Victoria Hospital for Sick Children.
A stunned Caroline and Chris followed the ambulance still unaware of what was wrong with their baby girl.
In the Royal she was immediately transferred to intensive care and then underwent a procedure to stablise her condition.
Caroline and Chris could only stand back and wait while the medical staff focused on helping their seriously ill daughter.
Caroline, who works as a customer advisor, will never forget the anxiety of that wait to hear news: “It was so frightening; it was as if time had just stopped as if someone had just hit a pause button.
“It was a very, very dark time. We knew they had to sort her out before they could speak to us and it was only an hour we waited, but it seemed like for ever.”
The couple was told that Sophie had transposition of the great arteries which, put simply, meant her arteries were back to front. She also had a serious coarctation of the aorta, which is a narrowing of the aorta.
The doctor had diagrams which illustrated for the couple just how serious the defects in Sophie's heart were. Three days later at just four weeks old Sophie had to undergo life-saving heart surgery.
Initially it was hoped she would be out of theatre after six hours, but it was an unbearably long 15 hours from they left their daughter sedated in the operating theatre until Caroline and Chris got the call that she was in recovery.
Caroline recalls: “We were with her until she went under and then we were told to go home and wait for a phone call. We were told it would be about six hours. She went into theatre at 7am and we didn't get the call until 10.30pm that night.
“We were told it was very risky surgery and there was an 80-20 chance of her surviving it. She was so ill that we didn't think she would make it and I arranged for our minister to come up to the hospital the night before and baptise her.
“We really thought we were going to lose her and the wait was just horrific. It wasn't too bad for the first six hours as we had been given that time frame and we had more or less prepared ourselves for it. But the rest of the time was horrendous. When the phone rang at 10.30pm we went straight the Royal and what we were confronted with when we saw her I don't think any parent should ever see.
“Her wee chest was still open and she was swollen and there were tubes everywhere and it was a very frightening experience.”
As little Sophie fought for her life in intensive care there were no guarantees. She had come through a lot and still had a very tough road ahead so all Caroline and Chris could do was wait and hope.
She was in intensive care for five days and on life support for two weeks. Then on Mother's Day nurses felt that, for the first time since her operation, Sophie was well enough for Caroline to hold. It was the first time in over a month she had got to hold her baby — a Mother's Day gift that can never be topped.
Caroline says: “That was the best day of my life. Up until then we had felt so helpless and it was so hard not being able to hold her or touch her.
“After that the nurses got us involved in little things, like putting her socks on, or a hat on, or changing her nappy. Little things that we take for granted, but which meant so much for us at that time.”
Sophie was finally allowed home from hospital on May 17.
She has had to attend the Royal as an outpatient every six months, and in September of this year underwent a straight-forward procedure to have a cardiac catheterisation.
Caroline adds: “Everything is very, very positive. At the moment all is good and there is nothing on the cards in terms of her needing more surgery, but who knows what might happen 10 years down the line?
“We don't dwell on it and we take every day as it comes. We don't treat Sophie any differently to how we treat Josh; we don't wrap her in cotton wool or look at her as a sick child. We want her to have a normal life.”
Josh dotes on his baby sister, and is another remarkable child who never complained while his parents spent weeks in hospital by his sister's bedside.
His mum says: “We explained to Josh that Sophie was sick and needed to be in hospital and we didn't go into any more details but he just seemed to accept it. He was so grown up about the way he dealt with it.
“He was absolutely brilliant.”
Sophie is such a bundle of energy and fun that the family now joke that when she had her surgery the doctors put an extra battery in her.
“She just has so much energy she amazes us,” says Caroline.
“You would think having been a sick child with a heart problem that she would be breathless or tired but she never stops, she never even needs a nap during the day, she has just so much energy.
“She completes our family. She was the one little missing piece and a very special little piece.”
Caroline is one of the many parents of children with congenital heart disease who has thrown her weight behind the Chest Heart and Stroke Baby Hearts Appeal which is being supported by the Belfast Telegraph.
The appeal aims to raise £172,000 to fund a new three-year research project which hopes to find a way to prevent congenital heart disease.
The project launches in Belfast next month and is called the Baby Hearts Study. It hopes to increase scientific knowledge about the environmental causes of congenital heart disease in very early pregnancy — perhaps before the mother even knows she is pregnant.
Caroline stresses: “I just think this research is so important. If these things can be detected early then families can be prepared which is a very good thing.
“We were totally unprepared.
“If they could find a cure then that would be great as well. In my mind knowledge is power.”
Caroline is also naturally very concerned about the review into cardiac services which could see the specialist unit in the Royal closed down with Northern Ireland families having to travel to Dublin or England. It's a prospect which fills parents here with dread and it's going to be another long six-month wait before a final decision is made.
Caroline says: “From our experience if we hadn't had the service in Belfast I don't think my daughter would have made it to Dublin.
“The stress of the extra travelling alone would have been too much for her.
“It is a traumatic time without being separated from your family by having to go to England or Dublin.”
Where your money will go
Here is what your donation to the Babies' Hearts Appeal can do:
* £25 will help to pay towards the recruitment of a family for the research study.
* £50 will help cover the costs of the cardiac nurses' support for the study for one week.
* £250 will pay for the cardiac nurses' support for the study for one month.
* £1,000 will help pay for the Baby Heart's Study for one week.
* £5,000 will help pay for the Baby Heart's Study for one month.
A little goes a very long way to help these babies
Our readers have been digging deep and thousands of pounds have been raised since we launched our Christmas campaign in support of the Chest Heart and Stroke's Baby Hearts Appeal.
Until Christmas Eve, we are asking 800 readers to donate, and make a massive difference to the lives of many families.
If 800 new supporters donate at least £25 each, that will pay for 110 babies from across Northern Ireland to take part in the study.
But no matter what the amount donated, it will help make a difference and will be welcomed.
Researchers at the University of Ulster along with paediatric cardiologists at the Royal Belfast Hospital for Sick Children are gathering vital information from families across Northern Ireland.
Some families involved in the study will have babies diagnosed with congenital heart disease. And other families will have babies born without the disease.
Dr Frank Casey, consultant paediatric and fetal cardiologist at the Royal Hospital for Sick Children, who is involved in the study, says: "Within Northern Ireland it's actually easier to do this kind of important study than in other regions, because all of the babies with heart problems attend one big centre in Belfast."
How you can help
OUR AIM: to help fund Belfast-based research into congenital heart disease in babies by raising at least £20,000 through our campaign
OUR TARGET: to enlist 800 supporters who will donate £25 each, covering research costs for 110 babies in Northern Ireland
HOW TO HELP: you can make a donation via www.nichs.org.uk/baby or alternatively telephone 028 9180 2080
USE YOUR COUPON: just print out the coupon below , fill in your details below and send it to the address at the bottom to make a contribution to this vital three-year study
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