Hello my name is Lesley my husbands name is Kerry and our 3 sons are Jared, Anton and Fergus. We live in Richmond, Nelson, New Zealand.
Fergus was born on 5 November 2008.
We had a beautiful homebirth and there were no signs of Fergus having anything wrong.
He was diagnosed at 10 weeks old with a very serious heart condition.
Congenital Heart Disease/ Congestive Heart Failure
Cardiac Diagnosis - 15 January 2009
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
What this means is:
The two valves on the left side of his heart are abnormally formed.
The Mitral valve doesn’t close completely so blood flows back through in to the left Atrium (top chamber) which made the left atrium very large.
The left Ventricle (bottom chamber) has a very thick wall, because it has to pump harder to keep the blood flowing around the body.
The Aortic valve had a single teardrop shaped opening which was very small, instead of having three leaflets to let the blood flow through.
The right Ventricle is smaller than it should be.
Congestive Heart Failure in Fergus’s case is caused by the valves on the left side of his heart being so abnormally formed that blood has a difficult time ejecting from the heart, leading to backup into the lungs which is worsened by a leaky Mitral valve. A result of congestive heart failure is poor growth as all the extra work results in the inability to take in enough nutrition to grow and also tiredness. This is because a lot of energy is used up by the heart as it works harder to do its job.
We were rushed to Starship on the 15th of January 2009.
On the 29th of January he had a risky Catheterisation procedure - Balloon dilatation of the aortic valve done.
Fergus is not currently in failure but he needs to be on medication to reduce the fluid building up in his lungs and liver.
We were in Starship for 3 weeks. From the 15th January - 5th February 2009.
Fergus had the procedure done to enlarge the aortic valve opening, which has helped to reduce some of the work his heart was doing. There is nothing more that can be done medically; all we can do is try to keep him well and growing. When he is around the age of 2 years old it may be possible to have a valve replacement procedure done, for both valves.
Fergus was born at full term; we had a planned home birth. Initially there was no indication of anything being wrong. He didn't gain weight as much as expected. A heart murmur was picked up at 6 weeks and again at 9 weeks by 2 different locum GPs. He started to be sleepier than you would expect for his age and also had started to vomit after feeds. On the 9th of January we saw our GP and were referred to Nelson Hospital.
On 15 January 2009 we went to this Paediatric Outpatients appointment. During the night before and that day Fergus's breathing had changed but we thought he may have a cold.
When the Paediatrician saw Fergus she was concerned so did obs, we were then taken to a treatment room in the children’s ward.
From there they put in an IV line and had an Echocardiogram (Echo) done. They could see something was very wrong with his heart he was admitted to Nelson Hospital and the doctor contacted the Heart specialist at Auckland Starship Children’s Hospital and it was decided we would be sent to Auckland. We were rushed to Starship that night by a Life Flight team.
On the 16th of January more tests were done at Starship Paediatric Intensive Care Unit (PICU). He had an Echocardiogram (Echo), an Electrocardiogram (ECG) an X-ray and bloods taken. From the x-ray they found he had pneumonia on the right lobe of his lung so he was started on antibiotics. He was put on Amiloride and Frusemide which helped to reduce the fluid building up in his lungs and liver.
The tests had shown some major problems and the doctors came to tell us their diagnosis. They said at that stage nothing could be done to fix Fergus’s heart.
We couldn't believe what they were telling us.
We told our families and friends just how serious the problem with Fergus's heart was, it was a great shock to us all.
Our other two boys were staying with their Grandma and Grandad, but this was the longest time away from us, I told them that we were at a hospital and that Fergus had a problem with his heart, in an attempt to prepare them for what might happen in the future, they both seemed to understand in their own way that we needed to be with Fergus.
I had been breast feeding but now I was expressing and fully feeding Fergus with breast milk via Nasogastric tube (NGT) and breast feeds, and even through this shock and stress managed to keep up with his needs.
It felt like a nightmare and I remember saying to Kerry when he asked if I wanted anything one day, "I want to wake up" his reply was "I know what you mean".
But I had made a conscious decision that I had to be strong and if there was any way I could help Fergus I would. He had been fighting to stay alive with out us knowing and if he could fight and stay strong throughout all this time, I would be fighting too and what he needed now was as much love and support as I could give him.
We were told that a surgeon was away and they would confer with her when she came back. We were moved to the Children’s Cardiac Ward 23b High Dependency Unit (HDU), where they worked out his feeds and meds. While he was in the HDU he started to give everyone the biggest smiles. We were moved onto the ward as he seemed to be more stable.
We wanted our other boys and family to come to Auckland so it was arranged that Kerry’s and my parents, my sister and the boys would fly to Auckland on the 22nd of January. They stayed at Ronald McDonald House which was a really amazing place.
Throughout this time he had many Echos, ECGs, X-rays and blood tests taken. Over the weekend we were told we could take Fergus out of hospital for short periods as the doctor said "we're looking at quality not quantity" this was so hard to hear.
So Saturday we took our boys for lunch at the domain and Sunday went to Ronald McDonald House so we could spend time with our boys and Fergus’s grandparents and aunty.
Over this weekend Fergus was stable but over the next three days he started to deteriorate, he found it was too much to take the volume of milk he had been and it had to be reduced, also his heart rate was very high reaching 180 at times during feeds.
On 28 January 2009 another Echo was done and the doctor told us that still nothing could be done. I came out of that echo carrying Fergus on the verge of tears, with Kerry following and made it back to the ward and Fergus's room before we had a good cry.
But the Doctors then had a conference with the surgeon who had returned and it was decided they would give us the option of them doing a risky Catheterisation Procedure - Balloon Dilatation of the Aortic Valve.
We had a meeting with the doctors and our family and decided to go ahead with the procedure with the understanding it was very risky and that he may come through the operation but have a worse problem or not pull through the operation at all. With this knowledge I told the doctors that if he didn't make it that I wanted Fergus to be a donor of any parts that they could use, so we may help another family with a sick child.
On the 29 January 2009 the Balloon Dilatation was done after the longest night and day of our lives first preparing to let him go and then the Good bye and Wait while the operation was done. Kerry and I had spent the night before with Fergus on the ward.
After the operation the doctor came up to tell us Fergus came through with the best outcome they could have hoped for. The operation had gone well. They went in through his neck via a cut to find his carotid artery, and used a 5mm, 6mm and finished with a 7mm balloon to open the aortic valve. During the operation he needed a blood transfusion. After the operation his blood flow had improved and his heart rate was lower.
We had to wait for him to come back to the PICU. He was ventilated over night but it was taken out at 9am the next morning and we moved to the cardiac ward HDU at 2pm. He had a temperature over night which was scary but it was treated and he was back on the ward by 10am the next day. He had amazed us all.
The people at Starship were incredible in the care and the support they gave us.
Life flight brought us back to Nelson and we stayed at Nelson Hospital from 5th - 9th February so we could meet the doctors and outreach nurses before we came home.
We have been home since then and Fergus continues to be doing well. He is gaining weight, is so much happier and developmentally is doing all the things you would expect for his age, although he gets tired more quickly.
He also has a greater risk of infection which we try to minimise by washing hands and reducing contact with people who are unwell.
He is on Frusemide and Amiloride once a day to help reduce fluid building up in his body.
His feed amounts change regularly. He wasn't managing all his feeds via bottle as he was becoming too tired so he has a Nasogastric feeding tube (NGT), through which most of his feeds are given. Throughout his first 6 months he has had a combination of breast feeds, bottle and NGT feeds.
He was fully fed breast milk that I expressed up until he was 6 months old. I continue to express as much as I can and top up with formula as his needs have increased. He has also started having some solids.
By giving him NGT feeds Fergus now has more energy to play and has started crawling!
We are so happy to still have our special little boy with us. He is a joy to us all. Every second we have with him is precious. His brothers adore him and he has been smiling throughout everything that has happened.
Thank you for taking the time to read about Fergus, a little fighter and our hearts delight.
Written 29-May-09 Updated 2-7-09
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