Anyone with a post-surgery heart baby? Updated, it was no big deal!

[Lindsay1234]

My first dd is not vax'd and is 7. (homebirthed, herbs instead of meds, etc.) Well my newborn dd (8 weeks old) is HIGHLY medical-ized because of a heart condition (and a couple other conditions). She had open heart surgery at 6 wks old and will need another one at a year-ish. So far the NICU has accepted my refusal of hepb with no problems but she will be discharged in a few weeks and Im afraid of the vax conversations.

I wonder about vaccines with her. It was a non-issue with dd1 but dd2 is very fragile and Im wondering if I shouldnt selectively (and delay) vax her. ANy thoughts? Maybe from other special needs parents?

Ill ask her cardiac doc but I obviously know what hes going to say.

[Marnica]

Since I am not in your boat I have no specific advice however I would totally pass on the hep B. Having a heart condition doesn't put her at any more of a risk of getting Hep B than any other child I wouldn't think.

As for the others, I suppose you would have to look at the particular disease and how, if contracted, her condition would make her more susceptible to complications and go from there.
Good luck!

[alegna]

Something else to keep in mind is that NONE of the vaccines have been tested on children with heart conditions or who have undergone surgery like that.

-Angela

[ammiga]

I wouldn't be afraid of the vax conversations, I would be prepared for them. You know they are going to tell you to vax, you know they are going to try and scare you, you know they are going to tell you your dd needs them. If they can't respect your decisions, then find another doctor.

I would be far more afraid to vax a fragile child than I would be to vax a healthy one, but I wouldn't vax a healthy child either (and I don't vax my healthy dd).

What are your reasons for not vaxing dd1? I would think most of the same reasons would apply. The lack of testing, the nasty ingredients, their inefficiencies, and the destruction on the immune system don't change from child to child. If anything, the intensify as the child is more fragile (as you put it).

I know you said she has heart problems, but how is her immune system? Is she immuno-compromised? If not, I would think she is fine without vaxes. If she is, I would be terrified to inject crap into her body.

Kids are meant to get childhood illnesses. They are way worse when they get them as adults. And if you vax, they are still getting exposed to the virus... just with a bunch of nastiness added in.

I'm so sorry you are in this situation. I can't even imagine going through what you are going through. Hang in there!

[ZoeyZoo]

Originally Posted by alegna

Something else to keep in mind is that NONE of the vaccines have been tested on children with heart conditions or who have undergone surgery like that.

-Angela

This is a good point. I haven't been through your situation with a child but I had a dog that had a hole in his heart and suffered some health problems as a result. At the time I wasn't even crunchy or as aware of vaxes as I am today but I chose not to vax him except for 1 rabies which is required by the city.

Something I would use to help determine my decision is to research the effects of the diseases and the vaxes on the heart.

[Peony]

Definitely be prepared for the conversation. If you don't want to say that you aren't vaxing, you can always say you are delaying. No experience with a heart babe, but I like the advice about researching the diseases and then deciding one by one if they could be a threat to her or not. I know they all seem scary in her current state, but Sophia certainly isn't a tiny, little thing, and this won't be her state forever.

It was nothing like open heart surgery, DD2 does have chronic lung disease. She was O2 dependent until she was 7 months old and still has respiratory problems. Her immune system has been affected because she catches every virus known to man. We don't vax, I would never vax her because of her conditions. There is no telling how she would react. It is a hard decision when your child has special needs.

[Fyrestorm]

One of my dearest friends has a VERY special needs babe...he's 18 mos now and has so far had 4 heart defects fixed, some cranial surgery, intestinal surgery...etc. He has an extremely rare genetic disorder.

She has refused all vaxes since no doctor can show her safety studies on babies with the same disorder as her son (only 20 in the world are known to have it). She has even asked for studies done on children with anything similar or even any of the defects he has...there is none...

How can they possibly know if vaccines would be safe for him?

They routinely reject children with any sort of disorder or illness from vaccine trials then proceed to recommend them for all children. I don't trust that kind of logic with my child, my friend doesn't trust it with hers...should you trust it with yours?

[bandgeek]

DD has different problems but is also quite fragile. I don't vax my healthy DS but I reconsidered for DD because I thought maybe she'd need more protection. I did do more research, but in the end I decided she shouldn't be vaxed either. Her problems are mostly neurological so it wasn't a hard decision. I didn't want to risk more neurological damage.

The doctors and the NICU need to accept any decision you make. You don't have to engage in conversation with them and you don't have to justify yourself. If they question you, just say, "I did my research and this is my decision. We may choose to have her vaccinated when she'd older and stronger." Even if you don't ever vax her, I think it helps keep them off your back if they think you will do it later.

As much as DD has been in and out of the hospital and as many specialists as she sees it has NEVER been a problem. I think it's because I'm simply matter of fact when they ask and don't let them engage me. When they say, "Her vaxes are up to date of course?" I just say "No she's not vaxed at all." Sometimes they leave it at that. Sometimes they ask if the doctors said not to vax her or if it is a personal decision. I just say "personal" and don't say any more. If they DID say something, I'd just say, "my philosophical beliefs are none of your concern."

[muldey]

Ds was born with Tetralogy of Fallot.He's had one open heart surgery,a full repair.He has not been vaxed,and he is almost 8yo.I had done a ton of research before he was born,before I knew he had the heart defects and had decided on no vax.Once I found out,I knew I would never ever vax him.They are not tested on children like him,and I wasn't going to take any chances.He has a chromosome deletion and autism,as well as the TOF,and putting anything in his body scares me.He's very healthy,you wouldn't have any idea what he's been through by looking at him.

[Lindsay1234]

Thank you Thank you thank you for your guys responses!!!!!! ::

I was thinking and researching backwards, looking at the vaccine for the risks, not at dds condition for the vax risks, kwim?

We didnt want to vax dd1 because we had not done any research but with us being young and having pressure from the Dr, we gave her the first 2 sets of shots, BOTH with the worst side effects (104 fever, projectile vomiting, site swollen to golf ball size for weeks)that we quit and just recently found a doc that agrees with our decision! dd1 is 7 yrs old!

dd2 is not immuno-compromised in any way.

I didnt get ANY flak for saying no to the hepb and Im hoping that because of my involvement with dd2s everyday care, I wont get any flak for not doing vaxs. They actually listen to my suggestions for her care now. I think that my biggest worry for the conversations is that weve been there almost 9 weeks and Im drained and might agree to anything.

Ill start researching tomorrow, I think I have another couple week til she gets discharged and we have the conversation.

[Lindsay1234]

The other day the docs came in for rounds and said that its about time to discuss vaxing and I said "Im just going to delay it for a while". One doc said "Well that was easy!" and put "delayed" in dd2s file. Thats it! I was worried for nothing!

I read in a few places that cardiac babies should wait until at least 6 months for vaxing, if any. I have lots of time to research.

[KimberlyD0]

In the case of cardiac babies they do generally wait a little longer, especially if there is sergery.

My second DD was born with a congenital malformation of the vascular system. While in uteral her vains didn't form currectly. She is a sickly child. Hospitalised 5 times in her first year of life for URI.

So far what we know is wrong is, she has Asthma, had RSV 4 times, and pnamonia once, she has kidney issues, they are not processing waist right and it builds up in her system, her heart is also weakend. She is deaf in one ear and partially deaf in the other, she is photosensitive, and she has nerilogical deleys, and they already suspect Autism.

And thats just what we know.

I live in Canada and Hepb is not done till 12 years old here. I have concidered giving it early because should something happen with her kidneys, it could lead to sergery which can lead to blood transfusions which is another way that HepB is trasnmitted. We havn't made our final choice yet, but I suspect that she will get it.

She has had all her vaccines deleyed by 4 months (started 6 months not 2) She just got her first MMR 2 weeks ago and will get her second at 18 month to 2 years.

She's also had the RSV vaccine (after having RSV 4 times the doctors and I agree its for the best.) She'll get one more seasons worth for that, she's also had the pnamonia vaccine because she is suseptable in a way a normal healthy child is not, and she got the flu shot this past season and will for the next few seasons because of her risk factors. These lasty few of course are ones we normally wouldn't give. She has had no reactions from any vaccine, not even a fever, and she gets regular bloodwork done so I use EMLA cream to numb the area for the needle and she dosn't even cry.

I have been researching vaccines for nearly 5 years now. While DD#1's vaccines were more broken up and she was on a deleyed schedual, because she is a normal healthy child and we had the luxury of being able to do that. With DD#2 we don't have that luxury. As much as the vaccines have risks, for my medically fragile chile they pale next to risks of not getting them. Its not worth her life not to get them.

Just some perspective from someone with a medically fragile child who has decided with proper reasearch that vaccines are the less dangerous route for her child.

[Birdie B.]

This is where we are with our Meadow. She's 8 months, and I'm on the fence about vaccines. For a normal healthy child I think they might be unneccesary, but Meadow spends a lot of time in hospitals, doctor's offices and labs, has undergone several surgeries and will likely need more in the future. So she is exposed to a LOT more than the average child. So far she seems very healthy, and we have no reason to believe she's immuno-compromised or neurologically affected - but we don't have a diagnosis of her condition so we have no way of knowing what could affect her.

It's so tough to know what to do - our family doc wants her to be vaxed, but I have avoided them (except for the intial rounds of hepb, polio, hib and prevnar which she scared me into). I am definitely going to go the delayed route, until we know more about Meadow's condition, though. But I feel like her risks are heightened since she's in hospitals dealing with IV's and blood draws and whatnot - what do you think?

[Emmeline II]

Originally Posted by Birdie B.

It's so tough to know what to do - our family doc wants her to be vaxed, but I have avoided them (except for the intial rounds of hepb, polio, hib and prevnar which she scared me into). I am definitely going to go the delayed route, until we know more about Meadow's condition, though. But I feel like her risks are heightened since she's in hospitals dealing with IV's and blood draws and whatnot - what do you think?

Vaccines are never tested in babies with any hint of health issues. Those babe are always excluded from any phase trials, but they are released as "safe" for all and "especially important" for medically fragile babes who are never included in the safety trials.

[twinsplusone]

I am so happy that it was such an easy 'no' & hop eit continues that way when you are released.

My son had open heart at 4 days old. I, at that time, was not as smart as you. He (with his twin) were my 1st & I attempted 'delayed' vaxing.........HUGE mistake.
they got their 2 & 4 mo HiB & DTaP, & nothing since. The 4 mo was HORRENDOUS for my babies (& me)

I hope your little one is healing well & can come home soon.

[2boyzmama]

One that you might want to start researching now so you have the time to make a decision is Synagis...the RSV immunoglobulin. It's not a "vaccine", it's an immunoglobulin given every 28 days during RSV season (varies based on where you live, for us it's Oct-Mar) It HAS been tested on special needs children, and is only available to special needs children in fact. You have to meet strict criteria to qualify for it, and it's extremely expensive (insurance should cover it no problem). Your daughter will probably qualify, so you'll want to research it and determine if you are comfortable with it.

We did do Synagis with Connor, he has a complicated airway malformation, was high risk for pneumonia (because of a swallowing disorder leading to aspiration), was/is underweight, and has a primary immune deficiency. RSV was definitely a scary prospect for us, although he has acquired it twice (the first time he got it, it was the day he was due for his March dose of Synagis). So although he did still contract RSV during the season he was receiving Synagis, he didn't end up hospitalized, which was amazing all things considered.

And I'd actually somewhat disagree with whomever said that having a heart condition doesnt put her at any higher risk of HepB. We actually did consider HepB a bit more heavily for Connor than I ever would for a "healthy" child because he stands a much higher chance of needing a blood transfusion during his surgeries. Blood is screened, but the screening process isn't perfect. I still decided to decline the vax, but I did consider it for a while. You might want to think about the possibility of transfusion before crossing that one off your list entirely.

And it's true that she will be spending much more time around drs/hospitals and therefore sick people, and her immune system WILL be compromised just because it's focussing on healing from a major surgery (so although it may be a perfectly normal immune system, it's being bombarded with extraordinary circumstances the rest of us don't have to go through). That definitely is reason to give pause and consider each vaccine slightly more in depth than you might otherwise. You still might come to the decision to delay or skip the vax entirely, but you probably should give it more thought.

[snomnky]

I don't have any first hand experience, but I do have two friends who have babes with heart conditions. One had open heart surgery, the other arthroscopic and both the little boys are fully vaxed. Neither seem to have had complications, but they are both under one year old.

That said, it is a much tougher decision when you are well educated on vaccines, these moms arn't. I would say if you feel the need to give her certain vaccines for one reason or another, I would space them and wait long periods in between.