Last year during a conversation with one of my Tesco Bridgewater Extra colleagues, the 'craic' as they say, came round about a cycle I was planning for an as yet undecided charity.
Anyway, my colleague told me about his beloved daughter and went on to speak highly about the work of a charity that has been a huge help to his family.
Now, Aron McKee's word is good enough for me, and there and then the recipient of my fundraising cycle was decided upon.....the Children's Heartbeat Trust
Ladies and gentlemen, as told by Aron's wife Judith, I present to you..........
Grace's Story
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| A real milestone: Grace’s first day at nursery! |
However our excitement soon turned to anguish and fear in June 2011 when the routine 20wk scan uncovered a possible problem with our unborn baby's heart.
We had to wait 4 days to get a fetal cardiac scan in the Royal Jubilee Maternity (these 4 days felt like a month).
We had the scan carried out by Dr Sands and Dr McCrossan who confirmed to us that our baby had a major heart defect....we were distraught and we had no idea what to expect.
Edith Crawford, the Ante Natal Liaison Nurse, met us and had a chat, and from that day we were in regular contact with the cardiology dept and Edith.
It was decided that it was safest for our baby to be delivered via induction procedure in the Royal Jubilee Maternity so that the cardiology team could be on hand.
I went into the hospital on 19th October 2011 (39 weeks gestation) and the process began. I was so scared as I was aware that while baby was in the womb she would be fine but the problems would start to occur when she was born.
Grace was born at 6.27pm and weighed 6lb 7oz, we got to hold her for about 15mins and then she was taken straight to the neo-natal unit. It was 4 hours before we saw our new daughter again.
Dr Casey and Dr Morrison had gone to see her in the unit and confirmed that Grace had pulmonary artresia and VSD and that she would require OHS within two weeks.
She was transferred from the neonatal unit to Clark Clinic two days later and was cared for there so well. On 31st October at 12 days old Grace was taken to theatre for her first heart operation.
She was so small and fragile and it was frightening handing her over to the surgical team. Five hours later we saw our baby girl attached to machines.
She had wires, tubes and monitors everywhere, it was so daunting.
Grace made progress for the next 36hrs and then she took a turn for the worse.
We were called and asked to make our way over as soon as possible. On arrival at Cardiac Services Intensive Care Unit we were met by Dr Craig, the surgeon and the anaesthetist.
We were informed that she had developed an infection and we had to prepare for the worst. We sat by our baby girl's bed while she was worked at intensely.
She was given a blood transfusion as she was having bloods taken every 15mins and this had to be replaced. After about 5 hrs she turned the corner and improved massively.
The next day she transferred back to PICU in the children’s hospital and then 4 days later back to Clark Clinic.
Grace progressed and we got her home on 25th November (5weeks old). Her big sister Rebecca was over the moon to see her baby sister home.
Grace continued to make progress until 1 week before her 1st birthday, when she was taken to theatre in RBHSC to have her cleft palate repaired (another problem she was born with).
She suffered respiratory arrest in theatre and gave the surgical team a real fright. It was so unexpected as she had never before shown any problems with breathing.
The procedure was abandoned and Grace recovered and was allowed home 5 days later.
Mr Hill (Cleft surgeon) had assured us that it would be fine as long as Grace had her palate repaired by the age of 2.
Four months later, we travelled to Our Lady's Children's Hospital in Crumlin, Dublin. Grace would have her second OHS to repair her heart.
We arrived 2 days before the procedure so pre-op checks could be carried out. The day before the surgery was planned Professor Redmond came and chatted to us to explain what would happen during the op and he told us that due to her previous respiratory arrest that Mr Russell (ENT surgeon) would check her airway and intubate her for theatre.
Mr Russell then spoke to us about his procedure and had warned us that if there was a problem then a tracheostomy may be performed, although we were confident that it would not be the case as this only happens to 1 in 300.
Grace was taken to theatre at 8am and we left her making her cat noises at the staff.
Half an hour later we were called to make our way urgently to theatres as Mr Russell needed to see us. He explained that Grace's airway was narrow and that they all felt a tracheotomy was best....Aron and I were once again distraught but had to consent as our daughter may not make it if she didn't get the trache.
Heart surgery was postponed and Grace was taken to PICU. We could not believe that our daughter would be silenced from that day. Four days later Grace was to suffer another setback as she became very unwell again and she was taken for heart surgery as it was thought her first shunt may have been failing.
She was too ill to have a repair done on her heart so a second BT shunt was placed in her heart. Grace returned to PICU and remained there for 11 days.
The day after her heart procedure she was diagnosed with swine flu, we again were left feeling very worried as we knew this could be deadly for anyone with medical conditions. We sat by her bed day and night until she was well enough to be transferred back to Clark Clinic in Belfast on 8th March. Although we had all been well looked after in Dublin we were so thankful to return to Belfast to familiar, friendly faces and to see our other daughter, Rebecca, whom we hadn't seen from we left for Dublin.
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| The McKee family present Jackie Fullerton, Children's Heartbeat Trust Patron, with a cheque for £4347, proceeds of Grace's Coffee Morning which was organised by the family. |
Grace recovered well and had her cleft palate repaired in May 2013 and then was eventually discharged on 20th June 2013 (four months after going into hospital).
It had been such a rollercoaster but we were out the other side!.
Grace celebrated her 3rd birthday on 19th October 2014 and she is a wee miracle. We all love her to bits.
Grace faces more surgery in 2015 to repair her heart and she gets regular check-ups in Belfast.
Dr Casey and his team along with all the other specialist teams we attend in RBHSC are fantastic and our wee loveable lady would not be with us today without them all.
We have met some wonderful friends along the way and are well supported by family, friends and of course the ladies of Children’s Heartbeat Trust!
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So peeps there you have it, a story that will hopefully give one of the reasons why I am turning the pedals for the Children's Heartbeat Trust this summer.
There are many stories similar to Grace's, please give what you can for this wonderful charity. http://uk.virginmoneygiving.com/OneManAndHisBike
Thank-you
Stephen
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