Any parents here have children with serious heart defects? - Mothering Forums

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Old 06-08-2009, 01:18 PM - Thread Starter
 
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Hello all,

It's been forever since I've posted on MDC. I never realized there was a special needs forum here until I heard it mentioned somewhere else.

I am currently pregnant with number 5, and we have 4 children with special needs. But, it is one of my two year olds, my little girl, who is the one who has me searching for information right now.

She was born with 5 different congenital heart defects (ASD, VSD, Wolff-Parkinson-White Syndrome, and aortic insufficiency). They all remained pretty benign until this year, and then everything has started to come apart at the seams. She underwent surgery in May to correct her VSD because her aortic insufficiency has been steadily degrading and it was the one thing they thought they could do to slow the deterioration.

Well, it hasn't done that. She now has moderate-to-severe aortic regurgitation. We're limping by on enalapril and lasix twice a day to control her skyrocketing blood pressure (130s and 140s over 70s and 80s) and hope to limp along her valve for as long as possible.

So, it's now been pretty much determined she is going to need a valve replacement in the near future. They're leaning towards doing the mechanical valve replacement because she had a VSD closure which apparently raises the risk of autograft failure significantly. *I* want them to do the autograft because putting her on blood thinners for the rest of her life means that over her lifetime she has something like a 40% risk of a stroke or some type of severe adverse "event" related to the anti-coagulation. Not to mention how many surgeries will she need to replace the valve as it grows? The thought doesn't thrill me, at all. Then again, if they do the autograft like I want and it fails, then she's back to square one and getting the mechanical valve anyway.

I don't know. This is a big long-winded post with probably way too much information in the hopes that this forum is large enough to have a few moms who have children with heart issues. Even if your child has different heart defects with different surgeries, I guess I'm looking for some BTDT wisdom. How did you decide between two things that both carry considerable risk? How did you feel about your decision? How did you advocate for it? And how do you deal with the gloom and doom they throw at you? I'm reading through some of the information the cardiologist handed me and I'm still reeling from what seem like such grim news.

Rene
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Old 06-08-2009, 06:10 PM
 
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Hello Rene -- and welcome.

My ds (now 8) had surgery to repair a VSD at 5 months old. His heart condition is considered fully resolved, so we haven't had to go through multiple surgeries.

There was a tribe for mamas with dc's who had congenital defects at one time (don't know if it is still active,) and then someone started a thread here in SN's so there are many mamas here who have experience with chd's. I'm bumping for you to see if someone can help you out.

Laura - Mom to ds (10) and dd (7) "Time stands still best in moments that look suspiciously like ordinary life." Brian Andreas.

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Old 06-08-2009, 06:18 PM
 
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My son has a genetic syndrome that has a very high occurence of cardiac defects, but thankfully he was spared that particular symptom of the syndrome. We're not sure how, honestly, because heart defect is one of the most common symptoms!

So I myself am not very well versed in cardiac issues, but I always lurk these threads because I'm pregnant again, and we chose not to do genetic testing prenatally, so we don't know if this next baby is effected or not. On ultrasound, his heart looks normal, but we'll see at birth I guess.

I hope more mamas come along and have some wisdom to share with you!

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 06-08-2009, 07:06 PM - Thread Starter
 
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Thank you ladies. I did a search for that thread Laura, and it's been closed but it was helpful to read. I'll look for the tribe you mentioned. Hopefully someone here has some wisdom for me....I'm sure they will.

And mom2boys, I understand. I was born with a CHD and now our dd2 was born with a CHD, which means the baby I am pregnant with has a 10-15% of also having CHD. Figuring out the whole fetal echocardiography thing this time around has been hard. We've ultimately decided to go ahead and do it because dd2 was a homebirth who had to be rushed all over the universe at 24 hours old and hospitalized at 6 days old due to her heart. I guess I'd rather not repeat the panicked rushing around, but even so I haven't really scheduled it yet either.
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Old 06-09-2009, 03:24 PM
 
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Hi, my daughter has Pulmonary Atresia Intact Ventricular Septum with Multiple Coronary Fistulae. Sophia is 8 years old and currently stable, or as stable as one can be while missing the right side of her heart. She has undergone 3 open heart surgeries and 4 caths before the age of 4. She also takes coumadin and will do so for the rest of her life. I know taking a thinner is a scary prospect, but at least in our case, the chances of throwing a clot are too great. Sophia is also ADHD.

Laura
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Old 06-09-2009, 09:09 PM - Thread Starter
 
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Laura----

Coumadin is the medication they say Nora would be on if we do the mechanical valve. How long has she been on it? Have you noticed any side effects or has she had any serious concerns while on it? I know the risks of *not* medicating when having an artificial valve are likewise significant enough that we would put on her the coumadin, but it's the lifetime risk that scares me. They're (hopefully) going to live a long life and it scares me to think that ultimately the coumadin could take that from her. We've also been told that she would have restrictions on activity if she ends up on the blood thinners (no contact sports, no skiing or activities with high risk of falls etc.). How does your daughter handle that?

I get that in part my perspective is still undergoing change. Obviously I know without surgery and without medication then she dies. But on an emotional level the risks of all of this still feel so high. And I'm really having a hard time with it all.

Our friend's daughter was born with Pulmonary Atresia and with Intact Ventricular Septum. She ended up with a heart transplant at 20 months old (she is almost 11 now). She does take anti-rejection medication but otherwise seems healthy and happy with no restrictions. It's hard sometimes to even remember that she has had a transplant. And I think I do that with Nora---- she looks so "normal" to me it's just harder not to escape into the denial that this stuff can't possibly be necessary.
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Old 06-10-2009, 01:29 AM
 
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Heart baby here too! Sophia has Tetralogy of Fallot with a narrowing of the pulmonary valve (as opposed to absent valve, from what I understand) She is 5 weeks old and is hopefully getting surgery to place a temp shunt this week. She will have one BIG repair surgery later on.

I havent BTDT yet but I know from my experience these past weeks that finding the Cardiac team RN is your best bet. There are 2 on our Cardiac team here and not only do they know every bit of info but they also act as counselors and as friends. They know exactly what you are going through!

Good luck!!!!

wife. dd1 : dd2
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Old 06-10-2009, 03:03 PM
 
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Hi Rene,

I don't have much advice for you because my dd's CHD is electrical not structural but just take one day at a time. When making choices for my daughter I try to choose quality over quanity for treatments. Sorry I couldn't be more help but goodluck!
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Old 06-10-2009, 06:24 PM - Thread Starter
 
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Niki--- can I ask what your daughter's diagnosis is?

My daughter also has an electrical issue with her heart--- she has Wolff-Parkinson-White syndrome and she had a cardiac ablation for that in January. It was considered a "moderate" success because they had to leave some abnormal pathways that were too close to the AV node to ablate. They hope to ablate those later as she grows. She passed out and stopped breathing on New Year's Eve which is what started the deterioration of everything. I feel like since that day we haven't had a chance to catch our breath they just keep throwing new things at us.

And thanks for the tip Lindsay. I hope all goes well with your little one's shunt surgery and her big repair...how old will she be when they do her repair?
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Old 06-11-2009, 12:59 AM
 
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And thanks for the tip Lindsay. I hope all goes well with your little one's shunt surgery and her big repair...how old will she be when they do her repair?
Its whenever she grows out of her shunt. Anywhere from 10 months-ish to 3 years-ish. No clue really.
The cardiac team is so good, Im actually not worried! (Im sure I will be the day of though!)


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Old 06-11-2009, 11:10 AM
 
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My ds has Tetralogy of Fallot.He had the full repair done at 10 weeks old.They removed his pulmonary valve but did not replace it.He may need one later on as he grows(he'll be 8 next month),but right now he's doing great.His VSD was closed with muscle from around his heart so that it will grow with him.I don't remember all the details,it's been so long.He had his repair done at Children's Hospital Boston,and they were wonderful.He is autistic,but high functioning and the drs are not sure what caused it.He does have a chromosome defect,and his geneticist thinks it's all tied together.He also has problems with his legs at times,they hurt him when he does any physical activity for any length of time.His neurologist thinks that it's mitocondrial,and there is nothing that can really be done about it.

All in all he is a healthy(for the most part),happy boy.You'd never know by looking at him that he has heart defects.

Student mama to one awesome,talented and unique dd,15 and one amazing, sweet and strong ds,12(born with heart defect Tetralogy of Fallot,also on the autism spectrum),9 cats,and 2 gerbils.
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Old 06-11-2009, 06:41 PM
 
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Congrats on your pregnancy!

My son (6) has Tetralogy of fallot and had a full repair done at 4 mos old, his repair sounds very similar to that of muldey's son, except done in NYC at CHONY. He's only had the one surgery, so we haven't had the same considerations.

I would highly recommend that you check out littlehearts.net, they have a support network to find information like you are seeking. There is a pretty strong population and you may even connect with someone in your region who uses the same hospital.

Good luck with your decision and thought for your daughter!
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Old 06-12-2009, 11:02 AM
 
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Like several others on this board, I have a child with what's considered a moderate heart defect -- not among the most severe ones in terms of long term health and activity concerns, medication, etc. On rounds, one of the cardiologists at the children's hospital described DD's case to the residents as "Plain old garden variety Tetralogy of Fallot with pulmonary stenosis." As a teaching hospital with first-rate surgeons, they're used to dealing with very complex cases, and my DD's problems were pretty small potatoes to them. Still, it's humbling to remember that children used to routinely die from TOF just 50 years ago. And modern medicine has made amazing progress with HLHS and other single-ventricle defects, even in the last 15-20 years.

So, two things that come to mind for your situation:

1) We can't look more than a few years into the future. This can be a negative thing, as people with complex CHDs can develop unexpected complications at any time -- but it's also very much a positive thing, as new tests and treatments are constantly being developed.

2) Because the field is changing so rapidly, expertise and standards of care vary *widely* from place to place. If your local doctors don't seem to have a lot to offer, look into getting in touch with the best hospital(s) you can find for your daughter's specific condition, and see what their cardiologists have to say. (I always hear CHOP and Boston mentioned for heart stuff in general, but maybe there are others that are just as good, or better, for your DD's specific problems.)

to you. I hope you can find the help you need to make a decision that you're comfortable with.
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Old 06-13-2009, 09:40 PM
 
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Had the shunt placed yesterday morning and everything went great! Shes in the picu recovering now and Im at home, resting and taking a shower. For the ones that had newborn or small babies with this surgery, did you sit at the bedside the whole recovery time? I was a mess yesterday and seeing her in even a little bit of pain made me hysterical so I spent most of the time in the nicu where I know the nurses.
Today its better but Im SO afraid of infection, Im not touching her or spending a lot of time there. I feel really bad but I honestly am scared of either making her move because she hears me or bringing in germs. :

She will probably go back into the nicu tomorrow for the rest of her hospital stay.

wife. dd1 : dd2
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Old 06-13-2009, 10:07 PM
 
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Had the shunt placed yesterday morning and everything went great! Shes in the picu recovering now and Im at home, resting and taking a shower. For the ones that had newborn or small babies with this surgery, did you sit at the bedside the whole recovery time? I was a mess yesterday and seeing her in even a little bit of pain made me hysterical so I spent most of the time in the nicu where I know the nurses.
Today its better but Im SO afraid of infection, Im not touching her or spending a lot of time there. I feel really bad but I honestly am scared of either making her move because she hears me or bringing in germs. :


I'm glad to hear that all went well.

I did sit by bedside the entire time after my ds' surgery (5 mo.) I spent every night in his room. I only left to use the restroom, and when I did need to go home (my dh was on bed rest with a herniated disc at the time,) my mom and/or dad stayed with ds. I was so relieved when they allowed me to hold him again. I'm sure that you are afraid of germs and infection, but I think it might be a good thing for you to touch her and be with her. The hospital staff wouldn't allow you to do anything to jeopardize her recovery.

Laura - Mom to ds (10) and dd (7) "Time stands still best in moments that look suspiciously like ordinary life." Brian Andreas.

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Old 06-14-2009, 07:15 PM - Thread Starter
 
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How long do they expect her to be in the hospital? I'm *so* glad to hear she is doing well!

My little one was two when she just had her OHS. Definitely a whole different kettle of fish. She mostly slept the first few days but she needed us there, so we managed to arrange child care for our other three and both my husband and I stayed with her.

The CICU was predominately very little babies when we were there though, and I did notice that parents of the babies would be gone more frequently---- the nurses confirmed that and said that often the little ones were basically asleep the entire time.

But I do think touch is important. With toddlers who start waking up but still don't understand, they had these "no-no bracelets". Technically they were restraints, but they didn't tie her down to the bed, they were really loose bracelet type things that had a lot of leeway but offered a little bit of resistance when she would try and yank a tube out, and gave us enough reaction time to gently hold her hand to keep her from pulling them out. I agree that touch is important. Even with a toddler it was hard to find space under all the wires and tubes, but I mostly stroked her face and rubbed her feet and rested my hand on her hair and just tried to talk to her.

The hardest for her was being on the vent. She was on it for several days and any time she came to she immediately started yanking at the vent tubing. Still, I think being there to comfort her was ultimately better.

ITU though. It's hard and I don't think there is any judgment for what you choose to do.

IRT infection, I religiously washed my hands when I was touching her. It was a big fear of mine too.
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Old 06-15-2009, 02:37 PM
 
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Laura----

Coumadin is the medication they say Nora would be on if we do the mechanical valve. How long has she been on it? Have you noticed any side effects or has she had any serious concerns while on it? I know the risks of *not* medicating when having an artificial valve are likewise significant enough that we would put on her the coumadin, but it's the lifetime risk that scares me. They're (hopefully) going to live a long life and it scares me to think that ultimately the coumadin could take that from her. We've also been told that she would have restrictions on activity if she ends up on the blood thinners (no contact sports, no skiing or activities with high risk of falls etc.). How does your daughter handle that?

I get that in part my perspective is still undergoing change. Obviously I know without surgery and without medication then she dies. But on an emotional level the risks of all of this still feel so high. And I'm really having a hard time with it all.

Our friend's daughter was born with Pulmonary Atresia and with Intact Ventricular Septum. She ended up with a heart transplant at 20 months old (she is almost 11 now). She does take anti-rejection medication but otherwise seems healthy and happy with no restrictions. It's hard sometimes to even remember that she has had a transplant. And I think I do that with Nora---- she looks so "normal" to me it's just harder not to escape into the denial that this stuff can't possibly be necessary.
I'm sorry this is hard for you, really, I think I'm just so used to "big deal things" with Sophia that taking Coumadin is not a big deal for us. I mean, don't get me wrong, I don't like the fact that she has to take rat poison, but like you know... the alternative is possible death and I do believe the possible death from a clot far out weighs the negatives of long-term coumadin use. Sophia has been on Coumadin since age 4. She began swallowing the pills at that time. I don't get her INR checked every 4 weeks because she never has had fluctuation. I get it checked approximately every 8-10 weeks.

I do not restrict Sophia is ANY way. She's a girl, so she won't be playing football, but she certainly rides her bike, falls down, swims, etc. She doesn't play baseball or soccer because she physically isn't capable of it. She has had 2 good falls which required head CT's and she is always covered in bruises and looks like a battered child! I've had to remind the school that I don't beat her - it's the Coumadin :. But again, it's not every day you find an 8 year old on Coumadin, so I don't fault them for questioning me at all. I understand now that most folks don't get and will never get my life or Sophia's life. It's an impossibility to comprehend something as huge as PA-IVS until you've walked down that road. I can say I've made my peace with it.

I trust in God that things will work out in the way they should, honestly, I don't even give her condition much thought. Thinking and dwelling on things won't change what's going to happen. I used to think things to death, but that does no good. It wasn't a very healthy way for me to live. So not suggesting you are, but I know I did and I'm so grateful I don't anymore.

Laura
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Old 06-15-2009, 04:49 PM
 
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Dd is doing GREAT today!!!! Her blood pressure is stable, her chest congesting is clearing up, her sats are good. She will go back to the nicu today for the remainder of recovery and to learn to eat (shes had nothing by mouth yet but has taken a paci). (maybe 2 weeks, barring any other complication):

Did any of you go home with special equipment?

wife. dd1 : dd2
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Old 06-15-2009, 05:06 PM
 
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Yes, we went home on a Kangaroo NG Feeding pump. Sophia was NG fed for almost the entire first year of life. So happy things are going well!
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Old 06-19-2009, 11:13 PM
 
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Had the shunt placed yesterday morning and everything went great! Shes in the picu recovering now and Im at home, resting and taking a shower. For the ones that had newborn or small babies with this surgery, did you sit at the bedside the whole recovery time? I was a mess yesterday and seeing her in even a little bit of pain made me hysterical so I spent most of the time in the nicu where I know the nurses.
Today its better but Im SO afraid of infection, Im not touching her or spending a lot of time there. I feel really bad but I honestly am scared of either making her move because she hears me or bringing in germs. :

She will probably go back into the nicu tomorrow for the rest of her hospital stay.
My LO did not have this surgery, but she did have open heart surgery at 6 weeks old due to coarctation of the aorta (complete). We were lifeflighted to Pittsburgh when she had her heart attack, so we ended up living at Ronald McDonald during this whole time. I stayed at her bedside the entire time. I was at the hospital from 8am until 8pm every day for a month. I left only to eat, pump BM and to call family to give updates. I did leave by 8-9pm at night because I was just emotionally and physicaly shot. Ugh, that is such a specific exhaustion that no one else can understand unless you have been in it.s

((hugs)) momma. I have your LO in my thoughts and prayers that she has speedy and uneventful recovery.

Leah- wife to Chris : SAHM to Henry (03/06)and to Evelyn : (06/08). She is our heart attack survivor at 3.5 weeks and went on to have open heart surgery at 5 weeks for Coarctation of the Aorta.
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Old 06-22-2009, 10:40 PM
 
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I'm the mom of a baby with a CHD too. DS2 surprised us with Total Anomolous Pulmonary Venous Return (TAPVR) when he was 2 weeks old and had a quad bypass a few hours after being diagnosed. He also had a PFO and PDA that were patched during his OHS. His defect is pretty rare and one of the more deadly defects but somewhat easy to fix. His pulmonary veins went from his heart, to his lungs, and instead of coming back to his heart they formed a vessel and attached (and became obstructed by) his liver. So they cut them and put them where they were supposed to be. His OHS was 2 years ago (the anniversary was Saturday actually). He recovered so fast and was home 9 days after surgery and his heart has been perfect ever since.

My sister has WPW syndrome and she's 25. It doesn't bother her much at all. She does get occasional heart palpatations and flutters but she does not need any surgeries or meds for it. I have Mitral Valve prolapse with minor regurgitation and it doesn't cause me many issues either. Just occasional diziness and always low blood pressure with random flutters. My sister has given birth once (and is preg again now) without any issues and I've given birth twice (and am preg again) without any heart issues.

As for valve replacement, have you sought a second or third opinion? Which hospital are you working with? From what I've learned CHOP, Boston Children's, and Texas childrens seem to be the top pedi cardi hospitals. CHOP and Boston do loads of research so I'd seek their opinions and read their research studies before deciding. They are the pioneers in CHD procedures and really know their stuff.

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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