Photo Fergus 17 months old. 27/4/2010.
Heart Children 2010 - Update Fergus’s Story
18 months old
27/5/2010
Fergus was born on the 5th November 2008.
At 10 weeks old Fergus was rushed by Life Flight to Starship Childrens Hospital in Auckland and he was daiognosed with a life threatening congenital heart condition.
15 January 2009 - Cardiac Diagnosis
1. Congenitally dysplastic mitral valve with severe regurgitation and stenosis.
2. Congenitally dysplastic aortic valve with severe stenosis.
3. Severely dilated left atrium.
4. Subsequent severe left ventricular hypertrophy.
5. Hypolastic right ventricle.
29 January 2009 - Cathertisation procedure
Balloon dilatation of aortic valve done via carotid artery using 7mm balloon.
Hello I am Lesley, Kerry is my husband and we have 3 boys; Jared 6y, Anton 4y and Fergus 18 months. This is my account of Fergus’s story.
Since learning of Fergus’s unique heart in 2009, it has almost been 19 months,
there has been a lot to cope with at times, but as always Fergus has amazed us all with his fighting spirit, happy personality and willingness to get on with life.
Life flight rushed us to Starship and we stayed for 3 weeks from the 15th January 2009 until the 5th February 2009. Then Life flight moved us to Nelson Hospital before we finally retuned home on 9th February 2009.
After the initial tests, the doctors told us there was nothing they could do for Fergus. We had been in Starship for 2 weeks while they kept doing more tests and still saying there was nothing they could do.
We couldn’t believe what they were saying.
All we could do was love and support him. He seemed to be deteriorating as each day passed but we didn’t give up hoping and praying for a miracle.
The situation was out of our hands so all we really could do was care for Fergus, give him all our love and attention, and keep praying. Every one we knew along with their churches, as well as other people who had never prayed in their lives was praying for Fergus. He was on so many prayer chains that we have no idea how many people were praying along with us. It ment a lot to know we had the support of so many people. All in their own way collectively asking, praying and hoping for a miracle!
Then the doctors decided to offer to do a Cathertisation procedure - Balloon dilatation of the aortic valve, but this offer was made with the understanding that it was very risky and may not have a good outcome or could be fatal.
We decided to have the procedure done.
We had confidence in the medical and surgical team that they would do everything they possibly could to get him through this procedure and care for him afterwards.
It was our only option and we had to give him this chance at life.
The Cathertisation procedure was done via common carotid artery cutdown and they used a 5mm, 6mm, and finished with a 7mm balloon. This helped increase blood flow through the aortic valve and relieved some of the pressure on his heart, which in turn reduced the amount of mitral valve regurge going back in to his lungs.
He came through in the best way they could have hoped for!
We stayed at Starship for another week then Life flight flew us back to stay at Nelson Hospital for 4 days to get to know the hospital and staff. Then we were allowed to go home, for as one doctor put it ‘for Fergus to have a trial at life’ this was a very strange feeling.
People said to us ‘it will be good to go home and get back to normal’ but you never can go back, and what is normal anyway?
You come home to a completely new life and have to change your lives to begin building a new kind of “normal” that suits the needs of your family.
This is not a bad thing but it can be hard to adjust to, understand or explain to others.
Having a child who needed so much care really helped us to focus on getting things done. It put a lot of extra stress and pressure on our family too but we made a real effort to appreciate the little things, like spending time with all our children having cuddles or playing and especially any milestones that the boys met and the huge smiles Fergus would give us.
We tried to make every second count!
Since returning, we have managed Fergus’s care at home and haven’t needed to stay in hospital. The doctors didn’t know how well he would be so he has done amazingly well to not need hospitalisation at some point.
He had a Nasogatic tube (NG) to help fed him from 15th January 2009 until the 30th November 2009. Almost a full year. We sterilised all his bottles and feeding gear and only gave him boiled drinking water until he was 1 year old.
He was Breastfed from birth, but found this to tiring, so after he couldn’t drink from me I expressed. He was exclusively fed breastmilk for 6 months and then I toped it up with formula until he was 1 year old, after this he went fully on to formula, which he still has now. He has always had Duocal added to his milk feeds to add more calories in to his diet.
At feeds he was first offered a bottle and any milk he didn’t drink was given via the NG tube. Which ment feeding could take a while.
It was done like this as he would become too tired with feeding to get enough milk because it put extra work on his heart, but we still needed him to have a chance to learn to suck, as this helps with eating and speech. He was given a dummy (pacifier) while we were in Starship and he has continued to have one. He is now eating all the same meals as the family with extra things added like butter or cheese to increase his calorie intake.
We were told Fergus was not a candidate for intubation, ventilation or admission to intensive care as there was no surgical option.
Over the winter of 2009 we made the decision to do as much as we could to minimise the risks of infections and illness for Fergus and also to help his body put energy in to growth, not fighting to keep him well.
So all of us apart from Fergus had flu injections and we decided to home educate our two older boys, over this time he only had a slight cold and one fever which we managed at home, so we felt we had made the right choice.
As he had kept growing well, so had the strength to fight these illnesses on his own.
2010 - We all had flu injections this year including Fergus.
We will continue to home educate our children to help meet all of their needs; as our oldest son has Encopresis, which affects him as a soiling problem and our second boy also has Encopresis, which affects him as constipation and we need to help them manage this, as well as concidering Fergus’s Heart condition.
You might think this is a lot to deal with but I love that I am getting to know my boys so well, I can support them as they grow, we can learn together as a family and we are teaching them to become the best boys and men they can be.
They really make us proud!
Fergus after a lot of care has kept growing well and is now following on the 50th percentile for weight and the 97th percentile for height.
He eats well and He has kept up with all his milestones – he was walking the week of his 1st birthday, says a few words and feeds himself!
He has a big interest in vehicles and some of his first words were “brumm and truck”. He is also a big help around the house.
He is into everything and loves exploring and tries to keep up with his two older brothers.
Apart from his frist rushed trip on Life flight to Starship Childrens Hospital in Auckland and a scar on his neck where he had a Catherterisation operation - Balloon Dialation of the aortic valve done at 12 weeks old, needing to rest frequently as he becomes tired quite quickly, taking a small dose of Amiloride and Frusemide each day which helps to reduce fluid build up in the body and adding Duocal to his milk to add calories to his diet, he is now similar to most other well children of his age.
The doctors now feel he could manage common illnesses better and would be given more intensive support in hospital if it was needed.
His heart is keeping up with his needs so far and as long as it keeps managing as it is; it looks like he may not need to have open heart surgery to replace the aortic and mitral valves at 2 years old like it was first thought; he will be monitored until there are signs of any changes affecting his heart or fluid building up in his body; but surgery will still be needed at some point in the future.
We were told nothing could be done until he was 2 years old and that he might not stay well enough to even live to 2 years, so anytime over this age without the need for surgery is a great achievement for him and our family.
Every day we give thanks that Fergus was given to us!
We feel privileged to be going through this journey with him, for what it has taught us and the growth that we have made as individuals and as a family.
To be able to support him in everything he has been through so far and is yet to come, and now to see him growing, learning and enjoying life. Is just Amazing!
He is such a special part of our family!
All my boys are my Hearts Delight!
We are so blessed to have Fergus in our lives!
He is a real little Miracle!
Contact us: lesleyandkerry@slingshot.co.nz
or visit: http://heartsdelightmyboys.blogspot.com
