Wanna start a "heart" thread? - Page 3 - Mothering Forums
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#61 of 100 Old 09-09-2008, 10:20 AM
 
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I've heard people call it a zipper, but is that from back when they used to use staples to seal the incision? They used glue on DS and internal stitches so it does not look like a zipper at all. Just a fine while line. He's very fair skinned too so the line is not very noticeable.

I like the "battle" story. It made my eyes well up with tears.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#62 of 100 Old 09-09-2008, 02:34 PM
 
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My daughter is 7 and has had 3 open hearts. Sophia couldn't really care less about her mid-line scar and didn't even know she had a scar under her arm until recently! However, she absolutely hates her chest tube scars because they really hurt her. Can't blame her, just looking at those scars hurts me!

Laura
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#63 of 100 Old 09-09-2008, 07:24 PM
 
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Anyone with a child with LQTS and/or long-term monitoring (Haltor, King of Hearts, etc) in school-age children? Beta blockers or surgery? How do you deal with the activity recommendations?

My eldest has had 2 episodes of recorded LQT episodes and he's still being evaluated by the Cardio clinic.
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#64 of 100 Old 09-10-2008, 12:53 AM
 
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Both my boys have abnormal EKGs. We are still waiting on a cardio appt. It's not until October!!!!
I noticed you were in Texas. Is this at Texas Children's Hospital? I know they can sometimes be slow but they don't usually make you wait that long if they think it's serious. My oldest was born with pulmonary stenosis and had a valvoplasty done there at 2 weeks old. He now just goes in for check ups with a Dr. Patt. Used to be affiliated with them but now is part of a practice out in Austin. He travels to College Station every so often so it's more convenient for us. Our son is 6 (almost 7) now and is doing great! His last check up we were told that there were no restrictions at all and it looked like he wouldn't need to have the procedure redone until he's at least 18, possibly 20. Woohoo!
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#65 of 100 Old 09-10-2008, 01:10 AM
 
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My DS(8 years old!!!!) has HLHS. He had his completion Fontan in May of 2006 and continues to do well. His O2 sats at his last check-up were 97-98%....they were in the 80's pre-Fontan and in the 60's post-Norwood.
He hates clothes that touch his scar...buttons, tee-shirt designs he is also very particular about clothing and his hair/body in general. I am not sure if this has to do with body control issues or just his general eccentric nature (DH is weird like that too, LOL).
We did take him to a therapist after his last surgery....just to kind of help him deal with the trauma and huge change in life for him and the therapist told us that as his brain matures, he will keep revisiting the surgeries and what his condition means. I'm not sure what to add to this thought right now....long day...but I just wanted to toss that out there to you guys
Oh...DS also has Auditory Processing Disorder which is not related to the heart stuff as far as we know....MIL,SIL and nieces also have it
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#66 of 100 Old 09-10-2008, 01:13 AM
 
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I think I just covered a bunch of this but....our 6 year old son had a valvoplasty done for his pulmonary stenosis when he was 2 weeks old. They had to stabilize him before he could be transported to a place equipped to do the procedure. I now have a set of 7 month old twins and they were both checked for any heart problems. Not a thing. They were very healthy.

I do have a question. We're going through the testing for genetic testing (which takes so long..) , but I'm curious to know if anyone else has some of the same things going on that we're dealing with. So far we do know he was born with the heart problem, he has just been diagnosed with a hearing problem in one ear, he's adhd and slightly retarded. We're still waiting on a few of the results but this is what we know right now. He was also born with hydrocephalus, but they were able to drain that in 3 days using a drain that ran into his feeding tube and an anti inflammatory on the 3rd day. I have no idea what might be going on. At first they thought it might be Williams Syndrome but that, Fragile X and a whole bunch of others have been ruled out. I know the geneticist will probably have a better idea of what's going on but I'm curious to know if there is anyone else out there having any of these issues.I looked up Noonans and the main problem I saw with it is that our son is actually a bit big for his age.
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#67 of 100 Old 09-11-2008, 09:48 AM
 
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Yes, a heart thread would be great! I'm almost 38 weeks pregnant, and my baby has a diagnosis of Hypoplastic Left Heart Syndrome (HLHS) from one hospital, and a diagnosis of Coarctation of the Aorta from another hospital. We'll know more after she's born and the cardiologists can get a direct echo cardiogram completed.

Hello to all the other mamas here!
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#68 of 100 Old 09-21-2008, 12:47 AM
 
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First of all, to you hsofia. I know how scary this can be.I will keep you and your LO in my thoughts... in addition to my DS with HLHS, my DD had a coarctated aorta and was a 33.5 weeker! She is now a brilliant, powerful 7 year old ballerina. Those surgeons can do amazing things.
I see you are in the PNW are you in Portland by any chance?My babies had thier surgeries at Emanual and I cannot say enough good things about thier surgeon and cardiologists.
As an aside...a sweet thing I forgot about.....when DS was born my SIL and nieces sent him a stuffed Peter Rabbit with a board book, and on the bunny's chest they cut a tiny hole and re-stitched it to give the bunny a scar just like DS's. I always thought that was such a sweet gesture:


LeBoof---we are pretty sure there is something going on genetically as 2 out of 3 of our kids had left heart defects. We have not taken part in any studies, but we have heard here and there that grandchildren of Vietnam Vets who were exposed to Agent Orange have greater incidences of heart and kidney malformation. I have researched this as has a friend of mine who was a nurse and worked with some of the first living HLHS kids and neither of us could find any verification.
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#69 of 100 Old 09-21-2008, 01:26 AM
 
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Welcome new mommas! Hsofia - I'm sorry to hear about your LO to be's diagnosis.

Our 2nd ever echo is on Tuesday. I'm sooo hoping that the VSD is closing. We got switched to a different card., but it's the head of the dept. so I'm hopeful... We'll see.

Oh - and no Vietnam Vets in our family, but that wouldn't surprise me at all. My mom had a heart defect and I have a very minor murmur (can't hear, but can see on echo) so I am sure it's genetic in our case.
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#70 of 100 Old 09-21-2008, 12:07 PM
 
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MamaCrane, Noah had both his surgeries done at Emmanuel in Portland. That's where the cardiologists here like to send their patients. We stayed at the Ronald McDonald house.

The second time (3 years old) was an overall "good" experience, the first time (3 months old) I had to fight over him nursing vs taking EBM. They wanted to measure everything he was eating, but he was refusing bottles and only wanting to nurse, (which I was very happy to see, prior to the surgery, he could only nurse about 1/2 the time before he'd get too tired). I was so glad when he got discharged, he didn't get another bottle for almost 6 months. Hopefully, they're a litte more progressive about breastfeeding now, five years later.

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#71 of 100 Old 09-21-2008, 06:44 PM
 
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Elvispuppy-I can see how that would have been an issue...I know I had to fight our Ped. tooth and nail to keep breastfeeding (wound up pumping for DS...pretended to pump for DD shhhhh) but our cardiologist (Legras) was very pro-breastfeeding both DS and teeny-weeny 3lb DD. We shared a room with another of his patients and likewise I heard him extolling the huge benefits of BF. I wonder if some of the older docs in his practice are a little less educated about bf? Weight is such an issue for heart babies it is probably a bit hard for some HCPs to trust a mother's body is making what is necessary rather than measuring and keeping charts although you'd think poopy dipes would suffice!

As an aside....my friend (baby with HLHS) saw one of the Anch. cards. for a check up and he had her bf her babe through an echo. Too cool
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#72 of 100 Old 09-21-2008, 07:14 PM
 
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Just wantd to pipe in her that I nursed through almost every echo - done by the tech and the cardiologist. Its really the only way (I've found) to keep a baby happy and still for that long. I would love to share any info on my positive breastfeeding after surgery experience. My dd has surgery at 6 days old (had one bottle of expressed milk after that surgery) and complete repair at 5 -1/2 months - n bottles completely breastfed at the breast. THe nurses even encourage me to cosleep after she was off oxygen (and the only reason we couldn't while she was on oxygen was that the tubes wouldn't reach to 'my' bed - dd had a crib.

nak sory for typos
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#73 of 100 Old 09-21-2008, 08:06 PM
 
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Elvispuppy-I can see how that would have been an issue...I know I had to fight our Ped. tooth and nail to keep breastfeeding (wound up pumping for DS...pretended to pump for DD shhhhh) but our cardiologist (Legras) was very pro-breastfeeding both DS and teeny-weeny 3lb DD. We shared a room with another of his patients and likewise I heard him extolling the huge benefits of BF. I wonder if some of the older docs in his practice are a little less educated about bf? Weight is such an issue for heart babies it is probably a bit hard for some HCPs to trust a mother's body is making what is necessary rather than measuring and keeping charts although you'd think poopy dipes would suffice!

As an aside....my friend (baby with HLHS) saw one of the Anch. cards. for a check up and he had her bf her babe through an echo. Too cool
I think it was more the nursing staff that were the problem with the breastfeeding. Toward the end of his hospital stay, one nurse finally got out the scale to weigh diapers and it was better from then on. We did have to deal with this idiot speech pathologist. I guess they sent her out because Noah has Down Syndrome and someone thought he couldn't possibly know how to nurse well enough to keep nourshed or some such nonsense. We basically had to "prove" it. Our cardiologist in Portland was McIrvin the first time and Keyser the 2nd time since McIrvin wasn't there anymore.

Our card here is Wellmann. He's been pretty pro-bf. I'm sure I nursed him during some kind of exam or another more than once, but I really can't even remember now. Noah did have weight issues before the first surgery and Wellmann wanted him on fortified breast milk for at least a couple feedings a day, but after the shunt, he was good and refused to even take a bottle.

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#74 of 100 Old 09-21-2008, 08:45 PM
 
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but we have heard here and there that grandchildren of Vietnam Vets who were exposed to Agent Orange have greater incidences of heart and kidney malformation. I have researched this as has a friend of mine who was a nurse and worked with some of the first living HLHS kids and neither of us could find any verification.
That is very interesting. DH's dad was in vietnam. We did have genetic counseliing because we have no heart issues in either side of mine or DH's families. We were told we have a 3% chance of having another baby with a heart defect. I have a murmur and mitral valve prolapse. My sister has WPW, but neither are considered "a genetic heart issue". I was told by the genetic counsellor that they believe heart defects are caused by the moms which broke my heart. She said they assume that all sperm that can fertilize an egg are healthy sperm.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#75 of 100 Old 09-21-2008, 10:43 PM
 
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That is very interesting. DH's dad was in vietnam. We did have genetic counseliing because we have no heart issues in either side of mine or DH's families. We were told we have a 3% chance of having another baby with a heart defect. I have a murmur and mitral valve prolapse. My sister has WPW, but neither are considered "a genetic heart issue". I was told by the genetic counsellor that they believe heart defects are caused by the moms which broke my heart. She said they assume that all sperm that can fertilize an egg are healthy sperm.
We also had genetic counseling prior to our second child, and was told that we had a 0.5% greater chance of having another baby with a heart defect. DS's CHD was a VSD, so I wonder if that makes a difference in how they calculate probability. DD was born with a murmur, but it resolved by 3 months. I was never told by anyone that CHDs were caused by the mother - and I was told that the heart defect happens *after* fertilization. These links support that -- and that the causes are unknown. Don't blame yourself.
http://www.mayoclinic.com/health/con...efects/CC00011
http://www.nhlbi.nih.gov/health/dci/...hd_causes.html

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#76 of 100 Old 09-22-2008, 01:27 AM
 
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I was told by the genetic counsellor that they believe heart defects are caused by the moms which broke my heart. She said they assume that all sperm that can fertilize an egg are healthy sperm.
If that were the case all genetic issues would be from the mom - and that's not the case, so that can't be true. There are a bazillion genetic problems that are caused only when both the mom and dad are carriers.
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#77 of 100 Old 09-22-2008, 02:18 AM
 
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Yes, genetic disorders caused by an autosomal chromosomal change (that is, the DNA that makes up chromosomes 1-23) can come from either the father or the mother.) X-linked disorders (changes to the DNA carried on the sex chromosomes come from either one parent or the other, like colorblindness. Also, mitochondrial DNA comes only from the mother; the sperm does not contribute any mitochondria to the zygote.

But in any case, genetic errors are a spelling error in a chemical carried inside a single cell. They have nothing to do with the health or intentions of either parent. They have nothing to do with the mom "not taking care of herself." They are not something anyone could cause even if they wanted to. There is no blame to place in the case of a genetic anomaly.
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#78 of 100 Old 09-22-2008, 02:09 PM
 
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We're going through the testing for genetic testing (which takes so long..) , but I'm curious to know if anyone else has some of the same things going on that we're dealing with... I'm curious to know if there is anyone else out there having any of these issues.I looked up Noonans and the main problem I saw with it is that our son is actually a bit big for his age.
Yes, us. My child with the cardiac issues has a very rare genetic syndrome - and it's a very variable syndrome and there aren't many cases... so his other issues may or may not be related (frustrating). It does take a long time for a diagnosis for the rarer syndromes, and I sympathize with how horrible the wait can be - so hard to treat a child's medical problems without knowing the cause.

Have you tried groups specifically for moms with kids with rare or undiagnosed issues? They are out there.

Best wishes - :
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#79 of 100 Old 09-22-2008, 02:53 PM
 
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Yes, genetic disorders caused by an autosomal chromosomal change (that is, the DNA that makes up chromosomes 1-23) can come from either the father or the mother.) X-linked disorders (changes to the DNA carried on the sex chromosomes come from either one parent or the other, like colorblindness. Also, mitochondrial DNA comes only from the mother; the sperm does not contribute any mitochondria to the zygote.

But in any case, genetic errors are a spelling error in a chemical carried inside a single cell. They have nothing to do with the health or intentions of either parent. They have nothing to do with the mom "not taking care of herself." They are not something anyone could cause even if they wanted to. There is no blame to place in the case of a genetic anomaly.
Thanks for this.
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#80 of 100 Old 09-22-2008, 03:00 PM
 
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Thanks mamas. They believe DS2's heart defect is not genetic. There is no known cause of TAPVR but it has been loosely linked to lead and/or pesticide exposure. DH does occasionally work with solder and that has lead and ironically I was in Boston visiting family and went apple picking before finding out I was preg. That puts the apple picking right when his heart was forming (in the first 8 weeks) and I did eat a few apples that were not washed off. My sister also climbed into a roped off area to get some peaches for us and after the fact I realized they may have been roped off because they were just sprayed with pesticides?

So when I spoke with the genetic counsellor I asked her if DH working with solder could have been the lead exposure and that is when she told me it would have had to be a mom factor not a dad factor. I guess lead would have damaged his sperm to the point it would have not been viable? That is just my guess because she said she assumes only healthy sperm can fertilize an egg. It is ironic that I did miscarry just before getting pregnant with DS2 so that always makes me wonder what caused that baby not to "stick". I absolutely hate not know what caused the defect - does it drive anyone else crazy?

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#81 of 100 Old 09-22-2008, 05:04 PM
 
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I absolutely hate not know what caused the defect - does it drive anyone else crazy?
Um, yes. I can't even get into all the reasons why this is such a difficult situation for us, but suffice to say, yes, it's very upsetting not knowing for sure, what caused my daughter's heart defect.

One thing that has comforted me though, it that I read somewhere that heart defects are the number 1 birth defect. So, it happens a lot. Even if you think you're doing everything "right". And, thank God that they are able to fix most of these CHDs.
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#82 of 100 Old 09-22-2008, 05:30 PM
 
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I absolutely hate not know what caused the defect - does it drive anyone else crazy?

I might have felt this way if the cardiologist that performed the intial echo. hadn't really stressed that this was no one's fault and not to spend any time blaming anyone or anything. If he hadn't said this, I'm certain that I would have gone down an ugly road. I do think that the further down the road you are from it, the better it gets. We're coming up on the 7th anniversary of my ds' surgery, and I no longer even consider asking why. It just is. We're also done with having any additional children, so I don't need to worry repeating past incidences.

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#83 of 100 Old 09-22-2008, 06:14 PM
 
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We're also done with having any additional children, so I don't need to worry repeating past incidences.
I think that is why it bothers me so much, because we are not done. We'd like to have one more child and not knowing what caused the defect means there is nothing we can knowingly do to prevent it from happening again. They tell us we only have a 3% chance of having another CHD baby but how do they really know that? They don't even know what caused it so how can they assess future risk?

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#84 of 100 Old 09-22-2008, 08:19 PM
 
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well, our cardiologist was adamant that it was noone's fault. That they have no idea how this happened and that it is totally random. But after doing some of my (admittedly lay) own reasearch, I have reason to doubt that. And it is one major reason why we are not planning anymore children.
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#85 of 100 Old 09-29-2008, 08:39 PM
 
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I think I just covered a bunch of this but....our 6 year old son had a valvoplasty done for his pulmonary stenosis when he was 2 weeks old. They had to stabilize him before he could be transported to a place equipped to do the procedure. I now have a set of 7 month old twins and they were both checked for any heart problems. Not a thing. They were very healthy.

I do have a question. We're going through the testing for genetic testing (which takes so long..) , but I'm curious to know if anyone else has some of the same things going on that we're dealing with. So far we do know he was born with the heart problem, he has just been diagnosed with a hearing problem in one ear, he's adhd and slightly retarded. We're still waiting on a few of the results but this is what we know right now. He was also born with hydrocephalus, but they were able to drain that in 3 days using a drain that ran into his feeding tube and an anti inflammatory on the 3rd day. I have no idea what might be going on. At first they thought it might be Williams Syndrome but that, Fragile X and a whole bunch of others have been ruled out. I know the geneticist will probably have a better idea of what's going on but I'm curious to know if there is anyone else out there having any of these issues.I looked up Noonans and the main problem I saw with it is that our son is actually a bit big for his age.

Hello,

My son is being checked for Noonans.

He has pulmonary stenosis, of the valve and artery. He is just a baby atm though..so there are still things we wouldn't be able to tell yet.

I think you are right, the geneticist might be able to see things more clearly.

It is hard. Ds is over three months and we still don't have results. They took the samples when ds was still in hospital.

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#86 of 100 Old 09-30-2008, 02:40 AM
 
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Oh wow, this is great - at least two mamas in this thread who had their HLHS babies in Portland. I'm actually going to OHSU. Legacy Emanuel was the first to give us a diagnosis, but I didn't like that the cardiologist we were seeing didn't really explain the severity of the condition and assumed many things: that I would be induced at 37 weeks, and have the baby at that hospital, and he would perform the surgery. DH and I prefer to have LOTS of information and make our own decisions.

So we'll be at OHSU/Doernbecher's, but we also have Children's Hospital in Boston and Stanford University on tap to give us 2nd and 3rd opinions. I just hit my EDD, so it could be any day now!

Also, regarding the cause ... for HLHS, they don't know what the cause is. Some suspect it's a random mutation of a gene. I don't imagine the likelihood of HLHS being hereditary is very high given that prior to the early 1980s it was 100% fatal. Kind of hard to pass on a "bad" gene if you don't live for more than a few days. But there are something like 3 dozen types of congenital heart defects, and they vary in severity and probably cause.

Neither hubby nor I have any known history of heart conditions in either of our families, and neither of us has any relatives who served in Vietnam or were exposed to Agent Orange. So in our case, it really does seem to be totally random. We were told our chances of having another HLHS baby was 20-25 times higher than the general population, but still only half a percent likely. I like to look at it this way: I'd probably have to have 199 more babies before having another with HLHS!
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#87 of 100 Old 09-30-2008, 10:31 AM
 
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You know what I thought was most interesting: the genetic counsellor told us that we were more likely to have another baby with any heart defect. I assumed we were only more likely to have another baby with TAPVR and I was somewhat ok with that. It is a deadly defect but it an easier fix than most of the other heart defects. Our surgeon put it this way "if I had to chose to have any of the major defect this would be the one I'd chose" Basically DS2's pulmonary veins were attached to the wrong place (his liver) so they detached them and put them in the right place then patched his hole (PFO).

I don't know if it is a case of being comfortable with what I know or not, but some of the other defects really scare me. That is one of the reasons we're still on the fence about having another child: Fear of the unknown. Also, having a baby with a heart defect has opened my eyes to all of the other medical issues/defects a baby can have. There are so many things that can be (for lack of a better word) "wrong" with a baby. Healthy babies really feel like a miracle to me. I'm sad I didn't appreciate DS1's health more.

But I do want to say that DS2's heart defect has really been life changing for me. I appreciate life so much more. I'm happier overall. I'm actually happy to be blessed with a child with a heart defect - does that sound nuts or what?! I feel lucky that we got to keep him because we've known so many other heart babies who have died. And I feel lucky that his recovery was easy compared to most other CHD babies recovery. I almost feel guilty about how easy it was after hearing some horror stories of month-long hospital stays and repeated open heart surgeries. Granted that how DS's surgery went down was scary as hell and extremely emergent but still it all went so well after that. What a rollercoater of emotions we all have to go through as heart mamas! :

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#88 of 100 Old 10-11-2008, 01:52 PM
 
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Hi there,
My daughter was diagnosed with an AV Canal at birth and went through her open-heart surgery to repair her defect at 3 months of age. She is doing great now, but it was a terrifying experience. My husband and I feel we were put through this experience because we are meant to help others going through open-heart surgeries with this little babes. I recently started a website for congenital heart defect support (www.chdsupport.blogspot.com).
Anyways, I would love to join this thread--I am new to this site and am not sure how this all works, but keep me posted!
Cheers,
Lindsay
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#89 of 100 Old 10-16-2008, 03:25 PM
 
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Our 2nd DD was born on Oct 2nd, this past Monday she was diagnosed with a large VSD as well as a ASD, that need surgical repair. Her aorta is also going the wrong direction though she shows no other signs of digeorges or 22Q11 there is that too. She had been nursing very well until she started to show symptoms. Now she is still nursing well, when she is awake to nurse. But her waking periods seem to revolve around her doses of lasiks, as well as being a result of ruckus and noise brought on by big sister. I desperatly want to keep her at the breast. I have no clue how I would pump, my older DD is very spirited and demanding. She was accepting a new sibling really well till this news came about. The last few days have been tough.
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#90 of 100 Old 10-16-2008, 04:45 PM
 
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Quote:
Originally Posted by Jilian View Post
You know what I thought was most interesting: the genetic counsellor told us that we were more likely to have another baby with any heart defect.

I did read that.

Has anyone hesitated in having more children due to that?

I would like at least ONE more child...of course we want ds' issues to be on the mend before we do that but the idea is kind of scary.

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