[33-weeker]

I'm 40. I was born with an ASD, VSD, & coarctation of the aorta. I had a PDA and a pulmonary banding.

I was pronounced healthy at birth, then after my first month checkup, I was diagnosed with congenital heart defects at about 5 weeks of age and had heart surgery for the coarct (end-to-end anast.) and banding (with subsequent removal and patch to open the narrowing - banned too much for my growth - they just had to guess) right away.

Then, after more than a year of dear mom rushing me to the hospital about once a month in CHF, I had open heart surgery at about 17 months of age to correct the rest and fix the pulmonary narrowing caused by the banding. (VSD closed on its own)

They were able to do this so *early* (this was 1967, remember) because Cooley had come up with a new procedure to prime the heart/lung with whole blood instead of saline (or somesuch) - allowing operations on smaller babies than ever before. Most of the babies with same/similar conditions around that time still died. I was the first, or one of the first (depends on which parent you ask. LOL) to undergo the new procedure, and one of the lucky few to survive.

I have lived most of my life normally ever since (no meds/ normal activities/ no marathon sports). Had a 9 Lb. girl then 6 & 7 Lb. twins. The twins preg. got to me and went into CHF when they were 4 days old. I spent 3 days in the hospital on lasix. But after a couple of years on Acupril and lasix, I am now just occasionally on lasix. Cardiac output is just inside low-normal range.

I have a murmur, but they think it's just blood rushing over scar tissue. My favorite thing to do is go to a new doc and let them listen to my heart BEFORE I tell them my history. Their eyes get big as saucers. I sit back and enjoy it for a few seconds, then I spill the beans.

Just curious what you modern-day PICU nurses think about all this as it relates to how kids compare these days.

[janfrn]

I think it's fabulous that you're all grown up, you're relatively well and have a family of your own!! My son has a transposition; he's 23 and was the first neonate at this centre to have the corrective surgery he had (Senning) and survive it. The original plan was to wait until he was six months or more old and then do it, but he had other ideas and they had no choice but to give it a go. He was also one of the last that they did here, because of the rocky courses and sudden deaths of a lot of the preceding kids. Later that same year they started doing the arterial switch and the Senning went into the history books. When I took him to the adult congenital heart disease clinic two years ago, I was told that patients with Sennings who are in good health and have no conduction abnormalities at 20 will be the same at 40, as that's the age of the oldest survivors... like you.

Nowadays, kids with your constellation of defects do extremely well, as a rule. Kids with simple ASDs are usually only in the PICU for one night, sometimes two. Simple VSDs aren't there much longer than that either. Coarcts sometimes need a bit longer because they need some time to get used to their new physiology and they may need an extra day or two of ventilation while the bloodflow to the systemic circulation balances out. They have significant hypertension for a few days and usually need sodium nitroprusside for a few days, then captopril for a while until it levels off.

Our sickest kids tend to be the Fontans and the total anomalous pulmonary venous drainages. We currently have a child with a Berlin heart following a failed Fontan, and we've transplanted a few others in the last year or so.

You are to be congratulated for your continued good health!

[rnsusan]

Dear 33 weaker,

I also am 41 and was born with a complex congenital heart defect. Try www.achaheart.org . You will find other people with your same defect. I had my first shunt in 1965. I am happy to hear how well you are doing. My congenital heart defect is why I went into nursing. As a child I had so many WONDERFUL nurses.

Susan

[33-weeker]

Originally Posted by rnsusan

Dear 33 weaker,

I also am 41 and was born with a complex congenital heart defect. Try www.achaheart.org . You will find other people with your same defect. I had my first shunt in 1965. I am happy to hear how well you are doing. My congenital heart defect is why I went into nursing. As a child I had so many WONDERFUL nurses.

Susan

Thanks for the info.

I have no real memories from back then, only some from a heart cath when I was 4 - mostly negative. I have often wondered, though, if I am comfortable in the hospital setting because I spent so much time there as a baby.

[Kidrn911]

I had a PDA closure 34 years ago. Although that is the whimpy of al CHD, my parents, uneducated totally had me freaked out about it, until I learned what it actually was.

I have this huge thoracotomy scar from Scapula to Nipple from the surgery. Now days they gave I think it is Indomycthin (Sp?) or do a laproscopic procedure to close the valve

[33-weeker]

Originally Posted by Kidrn911

I had a PDA closure 34 years ago. Although that is the whimpy of al CHD, my parents, uneducated totally had me freaked out about it, until I learned what it actually was.

I have this huge thoracotomy scar from Scapula to Nipple from the surgery. Now days they gave I think it is Indomycthin (Sp?) or do a laproscopic procedure to close the valve

I'm right there with ya, kid. I've got the same nasty scar from my banding and coarctation repair. Plus I have one from v-neck line to xyphoid from the open heart a year and a half later. I had to laugh when a fam-prac. doc thought I was going to be upset by a scar from an ingrown toenail repair. Just add it to the rest, buddy.