My son was born with 5 serious problems with his heart. Do you have any of these?

Lesley - posted on 04/22/2010 ( 2 moms have responded )

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Thank you for sharing your stories. IT'S AMAZING WHAT PEOPLE LIVE WITH EVERYDAY!
Hi I'm Lesley I have three boys. Jared 5, Anton, 4 and Fergus 17 months.
Jared and Anton have Encopresis (Soiling Problems) and Fergus was daiognosed at 10 weeks old with a life threatening congenital heart condition. So I have my fair share of things to manage.

Fergus's Cardic diagnosis
1. Congenitally dysplastic mitral valve with servere regurge and stenosis
2. Congenitally dysplastic aortic valve with severe stenosis
3. Severly dilated left atrium
4. Subsequent severe left ventricular hytrophy
5. Hypolastic right ventricle

Fergus was born on 5 November 2009, We had a beautiful home birth and he looked fine. Through the first weeks he was slow to gain weight and would tire with feeding. At his 6 week check and again at 9 weeks a heart murmur was picked up, but we were told not to worry. He just didn't seem right so I took him to the GP and was refered to a Paediatrician. We went to an outpatient appointment a week later. The doctor met us in the waiting room said has he been breathing like that for long, took us in to her room did obs then said we needed to go to childrens ward. They put an IV in, did an Eco and checked him over. Fergus was admitted to Nelson hospital and after a phone call to Auckland they said we would be going to Starship hospital as soon as Life flight could pick us up. They had to put another IV line in on his head as they tried all his other veins and couldn't get it in. Because Fergus was seriously sick.
That night Fergus and I were flown to Starship. They did tests and the next day when my husband arrived the told us their diagnosis and that as well he had pneumonia on the right lobe of his lung, and had a lot of fluid on his lungs so he was given antibiotics and would need to take Amiloride and Frusemide to help reduce the fluid. But there was nothing more they could do for him. We couldn't believe what they were saying. But they kept doing tests and after 2 weeks in hospital they deciced to give us the option of doing a Balloon dilatation of the Aortic valve but they made it clear that it was very risky. We decided to go ahead, as Fergus appeared to be getting worse. Thankfully he came through with the best outcome they could hope for and after a week we were on our way to Nelson, to stay in the hospital for a few days then home. They said if he could make it to 2 years, as the replacement valves don't fit in a small child, then they would have the option to do replacement valves.
Since then we have had a year in which we visited the paediatrician to start with monthly, with outreach nurses visits in between, but now go in three monthly. We fed Fergus by Bottle and Nasogastric Tube (NG) right through until November, I gave him expressed brest milk exclusively for 6 months then topped up with formular, all his milk feeds had Duocal added. He now eats the family meals and has formula with Duocal added. We decided to do home education with our older boys to help cater for their needs and reduce the risk of infection to Fergus. He only had a slight cold and a fever over the whole winter, and we hope we can keep him well over the next winter too. He is amazing everyone and is doing extremely well considering the unique way his heart is made. He has kept up with all his milestones, is so Strong and is our Hearts delight, just like his first name's meaning, Fergus means Strong and his middle name's meaning, Corwin means Hearts delight. We had no idea when choosing them just how right they were for him. We are so blessed to still have him with us and every second is precious. We try to make the most of every day, as who knows how many any of us will have, and have fun sharing the special time that we share.
Thanks for taking the time to read our story.
Lesley.

2 Comments

View replies by

Cindy - posted on 09/26/2011

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hi my twin daughters both have heart problems hrhs pulmanary atreasia intact venticular septom and tricuspid valve my second daughter has critical aortic stenosis with bicuspid valve and right now our problems are weight gain

Shannon - posted on 05/13/2010

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My daughter has hypoplastic right ventrical. She also has:



Single ventrical, Double outlet right ventrical, Pulmonary atresia, and Heterotaxt with Asplenia.



She has to have whats called a Fontan - it's three surgeries that ultimately directs the blue blood that normally comes into the right ventical directly to the pulmonary artery. She's scheduled to have the second heart surgery on the 22nd of June at the Children's National Medical Center in Washington,DC.



We also are stuggling with keeping Samantha healthy and gaining weight - seems these are important for heart patients! Best of luck to you and your family.



Shannon

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