pulmonary valve stenosis

rabialiones

frend of mine has a 9 month old baby who has been diagnosed this, she is frantic with worry. as she has been told that surgical procedures will be required.
the child seems to be quite healthy and has rarely been ill, so this diagnosis has come as a shock.
just wondered if anyone has any experience of this and could give some help or advice or share experiences. to put her mind at ease.
t;hanks

margaretclare

Hi

This is one of a group of congenital heart defects and yes, it does need surgery.

However, surgical techniques have improved to such an extent that the child can be expected to live a long and active life. There'll need to be follow-up, of course, during the growing years, but the outlook is good. The outlook, without surgery, is anything but good. 'Stenosis' means a narrowing. If anyone in the family is an engineer, a plumber, anything like that, think what it means when there is a narrowing somewhere within a closed system like a heating system, which is what the heart and circulatory system effectively is.

My daughter died 4 years ago aged 39, very suddenly and unexpectedly. She'd had high blood pressure diagnosed, but no one had yet worked out the reason why. She was in good health, didn't smoke, wasn't pregnant - no reason apparently. On postmortem it was discovered that she had coarctation of the aorta - another narrowing, a 'stenosis', just outside the heart where the big artery starts, the one that supplies the rest of the body.

I wish she had had this diagnosed at 9 months old!

I have a good friend whose little grandson was diagnosed with this coarctation in the early weeks of his life. He had surgery, he's now just had his 2nd birthday and is a healthy and active toddler!

Very best wishes

Margaret

rabialiones

thaanks for your response, really sorry about your daughter.
i will pass the info on , its just that the child seems to be quite healthy, she has not really had any illnesses, no teething , colic or other common childhood problems, this just came to llight after a visit to gp because she had a cold and temperature for the first time.
there does not seem to be any visible indicaations of any illness, she is a very content and playful child who is always playing and rarely cries.

margaretclare

rabialiones wrote:

thaanks for your response, really sorry about your daughter.
i will pass the info on , its just that the child seems to be quite healthy, she has not really had any illnesses, no teething , colic or other common childhood problems, this just came to llight after a visit to gp because she had a cold and temperature for the first time.
there does not seem to be any visible indications of any illness, she is a very content and playful child who is always playing and rarely cries.

My daughter lived a very active life, had been in the Sea Cadets followed by 6 years in the Royal Naval Reserve, did archery and a lot of similar countryside pursuits and no one at any stage picked up the fact that she had a congenital heart defect.

I know it's a big shock, but it's great news that this has been picked up so early in life, when it can be treated by modern techniques, expertise and technology.

Best wishes

Margaret

tiff

Hi, my daughter was born with a congenital heart defect, which included Pulmonary Stenosis. She had an emergency operation at 2 weeks old (known as a BT shunt) and the full repair operation when she was big enough at 2 years old. The first operation wasnt plain sailing and she developed a side effect called necrotising enterocolitis which basically resulted in her being starved for 15 days and an ileostomy. The ileostomy was reversed 3 months later. The second operation was plain sailing and my daughter is now a healthy and happy 6 year old.

I found out at my 20 week scan as my husband has a congenital heart defect too. Its very traumatic when you find out, but you learn to deal with it.

There is probably a heart forum somewhere where your friend can find info and share experiences. I know there are several organisations the hospital can put her in touch with if she wants to meet other families in the same situation etc.