Fergus 18 months old!

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

Fergus's Story - from the beginning

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