[Bethla]

Are there any moms whose babies were born with CHD? My 1 1/2 year old son was born with pulmonary atresia. He had his first open-heart surgery at 5 days old and then his second at 5 months old. Both of his surgeries were done at UC San Francisco hospital, about two hours from where we live.
I just wanted to know if any moms wanted to share their experiences. I wanted to know if it is normal to think about his heart problem daily. I feel like I'm obsessed with it at times. I even worry about his upcoming surgeries even though there is no indication that he may need one for several years.

 

[ldsapmom]

My baby's is minor right now, but it was diagnosed soon after his birth. My Isaac has an aortic stenosis, a bi-cuspid valve instead of a tri-sucpid valve, and some back flow of blood. The doctors agree someday the valve will need to be replaced, but in the meantime he is fine and has required no special treatments.

Who is your ped card? We live in Chico and actually have to come to Sac for our appointments. Ours is Dr. Juris, and we love him

. They also had us going to the Sutter Cardio Clinic, until after this last appt in January they said we did not need to continue coming since surgery was not in his near future.

Stacie

 

[Bethla]

His regular healthcare is through Kaiser. Our cardiologist is Dr. Gumbelevicius. A total non-communicator. Kaiser sends us to UCSF for practically everything. It's a long trip, but we feel really confidant with the doctors there. My son is actually part of a study there and they reimburse us for some of the costs of travel. We live just a few blocks away from the UC Davis med. center so at least I know he wouldn't have to go all the way to SF if there were an emergency.

 

[Jish]

You may want to check out the special needs board under parenting and see if any moms there are dealing with heart defects. I know Heartmama has a ds with a defect, but I haven't seen her around much lately. My best friend's daughter just turned six and completed the last portion of her Fontan Procedure in January of 2003. It was her third surgery -- one at 10 days, six months and 4 1/2 years. She is fine now and looks great. She will start Kindergarten in the fall.

I know this has been so hard on my friend and her husband at times and it has been something that is a part of every day of their lives. As an outsider, so to speak, I have a different perspective of their situation. They are financially well off and early on they got into the habit of showering her with constant "things" and "stuff." At this point, they have about twice the number of toys as the average day care. If you think I'm stretching things for the sake of effect, I'm not. They have a huge, 800 sq. ft. playroom downstairs that is full of toys and that doesn't include what is in storage. They justified their purchases because of her chd. Now, when she comes to our house with our average amount of toys she is bored and can't find anything to do.

The thing that worries me is that her defect has sort of become the defining thing in their family. It is what they are. Though her heart structurally will never be "normal," she is "fixed" at this point. However, they are having a really hard time letting her be normal. They called the principal at her new school asking if the school wanted a copy of her entire medical chart (which is several inches thick) on file (which, of course, they do not -- they simply want to know the basics of her condition and any limitations she might have.) They signed her up for pee wee tee ball but made a big deal about contacting her doctor to make sure she could participate (which they told her after her last surgery she could participate in sports, though when she gets tired, she should take a break.) They are having a hard time letting go of what made their family special and different for so long. I worry that there will be a point that their dd will not want to be different from everyone else, and won't want people to know about her defect, but her parents won't be able to let it go. She is a healthy and wonderful child, but is having some issues now from the overprotection of the past. Kindergarten could prove to be a real trial at first for her.

Like I said, I haven't personally had a child with a chd so I can't really know your thoughts and your fears. However, I think it is important to remember that all children want is to be loved and to feel normal. The defect will always be a part of your child, but hopefully, it won't be the part that defines him. It's hard to forget about the defect when there are daily meds and surgeries on the horizon, but your child will likely just want to grow up to be one of the kids, not to be the kid with the heart defect.

I hope I haven't overstepped my boundries, but this has sort of been a difficult subject for me lately. I see all the issues that they are having with their dd that stem from their past behavior (that continues on even today) and it's hard to see their dd struggling, and for them to continue to attribute it all to her heart condition which is indirectly true since the overprotectiveness came because of it. I have tried to help them see her as simply a healthy little girl, but they can't. I'm afraid that someday she is going to resent her parents for not being able to let go of the "handicap."

I wish you the best of luck and for healthy years to come. I hope that you have the support to get through the difficult times to come.

 

[Bethla]

Thanks for your insight. Your friends sound like they've done what many parents do with special needs children. They give the disorder a life of its own. Since I have two other children most of my energy goes towards us as a family unit. But I can understand their feelings of not wanting to "deny" their daughter, especially when you've seen your chid lying in a hospital bed with a life threatening problem. You want their lives to have as little discomfort as possible because they've had more than their fair share.

 

[kamilla626]

I was born with a CHD myself and I think about it all the time! There are some great message boards out there for mothers of cardiac patients, and you should be able to find a lot of support from other moms who are going through the same kinds of things.

 

[chrfath]

Our DD was born with a complete AV canal. She had a repair at 3 months old and now has moderate to severe leakage in a cleft mitral valve. This is related to her first repair. We are waiting to hear from Dr Mee at the Cleveland Clinic as to when she will need a second repair.

Veronicas CHD is very common for babies with Down syndrome(double whammy for us).

Yes, I do think about her heart issues a lot. She still takes lasix ans thinking of up coming surgeries doesn't help.

PM me if you would like to chat.

 

[stafl]

moving this thread so hopefully you will get more replies!

 

[muldey]

Hi! My ds,Gabrion, hasTetralogy of Fallot .I made that a hyperlink so you can see exactly what tof is,as I am horrible at explaining it.

Gabe will be 3 next month.He had his surgery at Boston Children's Hospital on Oct 5,2001,when he was 10 weeks old.They did the full repair,and also removed his pulmonary valve.He may need a 2nd surgery to replace that,we were given the time frame of 20-50 years,we can live with that.

I do think of his defect every day.I can't help it.I worry about him.Gabe has a lot of issues that we are dealing with.He had a brain MRI when he was about 14 months old,that did show his brain size has diminished slightly,and he has some tiny calcium deposits.The drs aren't worried,but of course it worries me.He is most likely on the autism spectrum.He does a lot of hand flapping(especially when he sees a fan spinning,he'll make all the wheels on toy cars and his trains spin and do this),his speech is delayed,he toe walks,and he has severe sensory issues.That said,he is the sweetest little boy.I am so grateful he is a part of our lives.

His ped and ped cardiologist are amazed with his health.He is rarely sick,and when he is,it never lasts for more than a few days.We use homeopathic meds and a ton of vit c,and this really seems to help.He is not vaccinated.I had to fight CPS about that,but we won in court.

We are very close as a family.I'm a SAHM,so I am here 24/7 with him and his big sister(6 on Saturday!).We spoil them,of course.We've been through so,so much(much more than the heart surgery),that all i want for them is to be happy and have fun,and be kids.We don't go overboard,as we cannot afford to,but do what we can.For the most part,we treat Gabe as any other child.I don't shelter him whatsoever,but I know his limitations(not due to his heart,but his sensory issues).He needs to be supervised constantly,so I can't take him anywhere where he could run off or anything like that,but in the stroller or sling he goes everywhere.

Most of our friends do not know of his heart defect.Even his speech therapist wasn't aware,until he came over and Gabe had no shirt on.He was shocked,he said he knew something was in his files,but he had no idea it was that severe.

Gabe wants to go to bed,but if you ever want to chat,pm me.HTH!!

Lisa
SAHM to dd(6 on saturday!) and ds (3 next month!)

 

[Rach]

My nephew was born with HLHS (hypoplastic left heart syndrome) he had his first surgery at 4 days old. Then at 5 weeks old, they had to re-do the surgery because the shunt was failing. He'll get his second stage surgery between 4 & 8 months of age, and a 3rd surgery around the age of 2. (I believe Jish's friend's daughter might have the same condition.)
Andrew is currently 2 months old, and doing wonderfully! He is very smiley and alert and has a big appetite. He is under house rest though, because his doctors want his exposure to outside sources to be VERY limited, so he only leaves the house for doctor's appointments and the occasional visit to grandma's.

My sister constantly worries about my nephew. I know she thinks about his condition often, since it can be quite fatal, but some times she dwells on it! She doesn't see him having a normal life, and she often feels she'll need to prevent him from doing so, just in case. I'm sure over time things will get easier for her, even though not by much.
I think your feelings are normal feelings that mother's go through when their babies are sick.
Take care of yourself, I hope I at least showed you that you aren't alone! (although there were plenty or responses to help that!)

 

[indiegirl]

My dh has a bicuspid aortic valve that will have to be replaced eventually. A friend just had it done and he had a stroke

I'm not excited about the possibility of dh going under the knife. It is a genetic thing, so we are having a fetal echo next week. I homebirth and don't want to have a babe with a heart condition at home. Our daughter's do not have the condition.

Friends of ours have a son with transposition of the great arteries. That boy has had so many surgeries, I can't even begin to imagine what it must be like for the family. Someone mentioned that the SN often gets a life of it's own and I can't really imagine how hard it must be to have to let go of your child at some point, after so much time worrying.

I cried all through Finding Nemo because of this--and my dd just has a hearing loss.

It's a tough lesson for any SN parent, I think.

Jesse

 

[Mama Bee]

DS has a complete AV, too. He was in and out of the hospital for the first three months of his life for FTT- he just wasn't strong enough to eat and what little nourishment he did get was sucked up by his heart working so hard. They finally repaired it at 3 1/2 months. He had just barely enough tissue to form two valves out of the one but he still has mild to moderate leakage. We hope he won't have to have a second repair but there is always the possibility. I wouldn't say I'm obsessed with his heart defect but I do think about it a lot. I often find myself watching him while he's running or playing hard to see if he is panting or having trouble catching his breath. We go in for cardiology check-ups every 6-12 months and when it's getting to about the 9th month and we haven't been in I do start obsessing. Handing him over to that nurse to take him back to surgery was the second hardest thing I've ever done... the hardest was seeing him for the first time after his surgery. It makes me ill to think about having to do that again.

However, I was looking back through some pictures the other day and there is such a marked difference between the pictures of the first three months and even just a couple of weeks after his surgery. He is SO MUCH healthier now. The difference is just amazing. I didn't realize how sick he was at the time but I can really, really tell now. He is such a vibrant, active boy that it's hard to imagine the baby that was too weak to eat.