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Original poster

December-Heart babies.

46 replies

survivour · 07/12/2003 14:35

I just wanted to know how many heart baby parents we had on mumsnet, as you can tell, I'm bored.... I have 3boys, youngest is 16months old and has TOFs.(4defects of the heart)

OP posts:
misdee · 07/12/2003 15:28

i have a heart dh. has dilated cardiomyopathy. no cure, just treatment. dd2 is being checked over soon.

Original poster
survivour · 07/12/2003 15:53

Hi misdee, I have read about cardiomy....and wish you all the best, and fingers crossed for dd2, my siblings have all been fine, and out of all mums grandchildren, there are 14 of them, my baby is the only one with the CHD. There is always hope, that is what has got me through these last 16months with my baby. Anyone else out there?

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chatee · 07/12/2003 19:27

i had a pda heart op as a baby of 13 months.....aaahhhh many years ago

Original poster
survivour · 07/12/2003 23:22

Thank you chatee, that gives us a lot of hope for our little ones. Have you had any problems since the op?

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Freddiecat · 08/12/2003 13:32

I have a coarctation of the aorta and my DS has an atrial sectal disorder. I am fine and my DS seems pretty OK too.

Original poster
survivour · 09/12/2003 01:01

Hi Freddiecat, have your heart defects been linked in any way? Or is it just a fluke? Your sons ASD, has he been put down for a repair? Sorry about all the questions, I feel I have to know everyting about the heart and how it works, and the fact that there is a possibility, that my son could need further surgery, later on in life.

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jessmack · 09/12/2003 16:03

Hi, I have a boy age almost 4.5, and a girl age almost 2.5 who had open heart surgery to repair her VSD (Ventricular Septal Defect - hole in heart) a year ago.
Misdee, good luck for your dd2's check.
survivour - has your ds had his "full" repair? Will he need another op in the future? Even though dd is "fixed" I still worry about the future, you never know, do you?

Freddiecat · 09/12/2003 16:36

Apparently they are not linked. Normally ASD would not be discovered until age 4 when he might start getting breathless but as I had extra scans (from a fetal cardiac specialist) during pregnancy they picked it up early. They think it might close up by itself - otherwise he might have to have a catheter-type procedure when he is 4 to put a plug in. We know a friend who had it done when she was 4 and she is fine.

eidsvold · 09/12/2003 19:48

my dd had complete atrial ventricular septal defect along with damaged av valve ... had her surgery at 8 weeks old - ended uop having to have two open heart surgeries within three days and other problems during recovery.. but she is 16months old and doing well.

Have a friend whose niece had same defect and had a further valve repair about three years ago - happy healthy 20 yo

Original poster
survivour · 09/12/2003 21:01

jessmack, Hi! Ds had full repair for TOFs, the VSD which is one of the 4 defects he has, was patched up, but I was told that it was similar to shuting a door, the gaps around the frame may still leak, these were the exact words of the cardiac surgeon.....I don't know what the future holds, thats the scarey bit. I was told he may need further surgery, but WHEN????
Freddiecat, I'm glad that you do not have to go through the surgery bit just yet, but when you do we will be here for you.
Hi eidsvold! I know what an ASD is, but which valve? my son is 16months now, we will have to compare notes on how they are doing. And so happy for your friends niece. That is so incouraging.

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Original poster
survivour · 10/12/2003 23:29

Bump up!!!!!!!!!!!!!!!!!!!!!!!!!!!

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Original poster
survivour · 12/12/2003 01:59

Bump up!!!!!!!!!!!!!!!!!!

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catyc · 15/12/2003 19:48

Hi, I've got a 13 month old with a VSD, but it's already getting smaller. Bit of a wait to see the paediatrician at first, but I was really impressed once we spoke to him.

Original poster
survivour · 20/12/2003 01:48

Hi catyc, so glad that the VSD is getting smaller! if you need any advice, you know where we are! Any others out-there?

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Luckymum · 20/12/2003 10:41

Hi.....we have a heart baby (?) she's 10 now and doing pretty well . Has ALCAPA, mitral valve regurgitation, supravalvar pulmonary stenosis and cardiomyopathy.

Festivefly · 20/12/2003 10:46

Ds2 aged two, three on the 27th Dec. Pulminary stenosis,tricuspid incompetence, and a hole. Had a heart catheter in March, all is well. Next appointment October.

misdee · 20/12/2003 13:16

appointment on moday. and we all have flu

jessmack · 20/12/2003 20:20

Good luck on monday misdee
Talking about flu (poor you Hope you're feeling better) has anyone's heart baby had the jab? I am thinking about asking the doc if dd needs it. My head says no she doesn't need it she is healthy and (probably) low risk, my heart says eek I'm scared, I don't want my baby to get ill! I live in a small village and each winter for the past couple of years there have been people (including a couple of healthy kids) hospitalised with pneumonia arising from flu.

Luckymum · 20/12/2003 21:46

Jessmack, hi, my dd had the flu jab this year mainly because I was worried about the Fujian strain thats about but it doesnt give full protection from any flu. She hasn't had the jab other years apart from the first couple of years post-op. The little ones usually get it in two half doses 4-6 weeks apart. Speak to your cardiac liason of you have one. There's also info on the \linkwww.childrens-heart-fed.org.uk/{}

Original poster
survivour · 20/12/2003 22:48

Hi Luckymum! We heart parents would make great cardiac doctors, all these long words we have learnt......If you are anything like me, you would have been on-line, for ages trying to find out as much about your childs condition as possible. If only I had put this much effort into my homework while at school, I may have been a doctor..... Oh well wishful thinking..........
Hello again FF! 3 on the 27th! it goes so quickly, I have a niece who will be 4 on the same date, I was there when she came into the world, the most beautiful sight in the world.... to see them open their eyes for the first time, take their first breath. Glad your son is doing so well.
misdee we will be thinking of you on monday. Get well soon.
Jessmack, my GP refused to do the flu jab, so I will phone GOSH on monday to see what their opinion is on the matter, if they say he needs it, I have been told that St. Micheals will do it for me at their immunisation clinic. They are part of Chase Farm Hospital, North London.

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Luckymum · 21/12/2003 12:32

Hi Survivour.......yes its a pretty steep learning curve and I am always online looking for info. We've probably 'met' before on other sites as I haven't been on here long.

Misdee...... fingers crossed for Monday hope it goes OK.........write down all your questions before you go cos there's always something you forget to ask......and ask everything even if you think its a 'stupid' question. Good Luck.

Festivefly · 21/12/2003 12:43

Hi survivor, good luck misdee, and everyone else. Yes time does go quickly, he's still my little baby though I was there like you survivour when my friend was in labour, magical moments, i felt very honoured
May all our little Heart children, have the best treatment possible,grow stronger everyday, and have all the love in the world to kiss them better

2under2 · 21/12/2003 16:53

also signing in with my heart baby - dd2, now 2.5 yrs old, large VSD, PDA repaired at 7 weeks old. Many problems afterwards and we eventually brought her home on o2 and tube fed, but she got rid of all the appendages in her first year .
She's ok now and has annual cardiac check-ups.

misdee · 22/12/2003 15:40

waste of time. doc saw us, said we need to be referred to either the cardiac team at harefield or at the local hospital. so have been referred (again) and will be seen hopefully in feb.

Luckymum · 22/12/2003 18:12

Misdee.....what an awful anti-climax for you and now you have to wait again. Get on the phone to the cardiologist's secretary and make a nuisance of yourself til you get seen. Hope your dh is Ok and try to enjoy (!) your Christmas.