Congenital Heart Defects / Open Heart Surgery (x-post special needs parenting) - Mothering Forums
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#1 of 13 Old 09-05-2012, 04:53 AM - Thread Starter
 
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I can't be the only one here with a baby born with this. My baby was born last month with TAPVR. He went through the open heart surgery and even learned how to nurse like a champ. Except a heart rate jump (and the monitoring and medication that came with that), he's a perfectly happy one month old today. I'm now thinking about vaccinations (do I have to cross post there? Is it allowed to discuss here?). I have always selectively / delayed vax (like, veeery slooowly and skipping a lot), but now I'm not sure what to do.

 

ETA: Obviously I did cross post here. I'm interested in anyone who had an infant higher risk or went through surgery, not just someone with a heart defect.


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#2 of 13 Old 09-05-2012, 06:57 AM
 
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One of my kids had OHS at age 2.

 

All my kids had severe reactions to vaccines, but his reactions were the most severe.  He is also the one most sensitive to gluten, and to chemicals in general.

 

He had some huge regressions from the surgery;  we don't know if it was being on bypass for 2 hours, or if one of the gazillion chemicals he was given had increased mercury or aluminum.  The hospital would not give us any information when we requested it.  If he'd been a newborn, we would not have been able to see any regressions, of course; they were obvious because he was 2.

 

I've stopped vaccinating.  To me, it's not worth the risk.  We've been through more than enough reactions, so we know that we are predisposed to them. 

 

And we've done our research on the vaccines themselves. They are not NEARLY as effective as we are led to believe, and even for healthy children, the risks are far higher than we are led to believe. I had been told that each child's reaction was one-in-a-million, until finally the pediatrician admitted that something was obviously going on and he didn't want to see more severe reactions while the kids were under his watch.

 

I was frightened into giving DS the flu shot after the surgery; they said he was at increased risk of pericarditis and endocarditis, because of the surgery, and that flu could trigger that. But they didn't tell me that the flu shot can trigger autoimmune disorders--which are a major cause of pericarditis and endocarditis.  They also didn't tell me that the flu shot's efficacy rate is practically nil in children and the elderly (which just happen to be the two target groups for the flu shot--?????), nor that the flu shot contained thimerosal (which was on his official list of allergies) and aluminum.  We don't know to what extent his regressions were caused or exacerbated by the flu shot.

 

I'm sure you will hear the same fear-mongering that I did.

 

But if I could do it again, I wouldn't vax for anything except polio and maybe DPT, and I wouldn't do anything til age 2, .  MMR I'm still trying to figure out.  I'm guessing that the rate of complications from measles might be higher for babies with cardiac issues--but so might the vaccine.  I don't think either one has been studied.

 

I would also nurse for at least 2-3 years, and go very slowly on new foods introduction. No need to rush into cereal, and I'd avoid formula altogether if possible. 

 

Hope that helps.

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#3 of 13 Old 09-05-2012, 07:18 AM
 
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The best person to talk about vaccine would be an Infectious Disease doctor. We did that after my son was very ill an at risk for severe hear complications. It was very use full and factual. Because of one of the treatments used, MMR was postponed but we did flue vaccine because in his case any flu  complications would have been deadly.

 

What someone posted about flu efficacy being nil in young and elderly is not true.  That comes from misunderstood and misquoted article in Atlantic Monthly years ago.

 

There is  thermasol   free in flu vaccine available.  I know because I am very allergic to that compound and I always get preservative free vaccine.

 

This article contains a table of vaccines and preservatives use.http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/VaccineSafety/UCM096228

 

 

 

 

As far as regression after surgery. That has nothing to do with aluminum or mercury but it has to do with bypass and anesthesia. Unfortunately, there is  well documented and researched decrees in cognitive function after use of bypass and general anesthesia.

 

Obviously, when the choice is between life and death as it is in OR. there is nothing one can do but proceeed.

 

www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&sqi=2&ved=0CCQQFjAA&url=http%3A%2F%2Fmy.clevelandclinic.org%2Fheart%2Fservices%2Fbypass_surgery%2Fneurological_effects.aspx&ei=d11HUI31NbD0iwKbgYHgDw&usg=AFQjCNGqzC4o0Z0QDj6DKeJvfPTI3DkFbw&sig2=26JtNF-ZPnCm61-FJJwyTQ

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#4 of 13 Old 09-05-2012, 07:24 AM - Thread Starter
 
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Thanks that is a lot of great information.

 

I do plan on nursing for 2 - 3 years, all my other kids I nursed as long as they wanted. They actually didn't push the flu shot (nor is it covered in the normal vaccine schedule, and I wasn't given a special referral for it).

 

I feel very lucky that he did well after the surgery. I was told to expect feeding issues, and fully prepared to EP for him, but thankfully he took to nursing very well. Before the surgery he had a little formula (they wouldn't let him nurse because they were trying to keep his fluids down to not strain his heart), but from the third day or so I was able to pump enough.

 

I'm worried now about the two month vaccines. They give 5 together here. They did not give me a hard time about skipping the hepB, but they are telling me pneumonia, and meningitis in particular will be important for him to have.


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Three big girls  twins.gif (10) + joy.gif (almost 9!); 

One little boy ROTFLMAO.gif(6) and a full on toddler diaper.gif  (8/12) born with TAPVR heartbeat.gif (repaired at 6 days old).

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#5 of 13 Old 09-05-2012, 09:41 AM
 
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Justmee, I'm afraid you're going to have to deal with two strongly opposing viewpoints on this thread.fencing.gif

As far as I know, this issue has nothing to do with anything from the Atlantic Monthly, and everything do with scientific studies, below, showing that the flu shot is largely ineffective.

 

Look up whatever you can on both sides, and draw the best conclusions for you and your baby that you can!

 

In previous years, package inserts have stated, "safety and efficacy have not been determined in pediatric and elderly populations."  At this point, FluZone is the only one approved for pediatric use, and the package insert dances around the safety/efficacy question. It shows a table from their own (self-funded) study of antibodies and seroconversion--but does not mention all the studies that show LACK of effectiveness.  (You can have a gazillion antibodies, but if you still have complications from the flu, then the shot didn't work.) The safety issue is also danced around:  the most likely LOCAL reactions are mentioned.  More severe reactions are not mentioned, except for allergy.

 

http://health.usnews.com/health-news/managing-your-healthcare/research/articles/2008/10/06/kids-flu-shot-largely-ineffective-over-past-few

 

Kids' Flu Shot Largely Ineffective Over Past Few Years

Study finds it didn't keep them from hospitals, doctors' offices

October 6, 2008

 

"Szilagyi's group found that children who got the flu were less likely to have been vaccinated, compared with children who didn't get sick.

However, after they adjusted for flu risk factors -- such as a child's location, sex, insurance status, chronic health conditions or timing of the vaccine -- the effectiveness of the vaccine could no longer be shown. The effectiveness of the flu shot ranged from 7 percent to 52 percent for 6- to 59-month-old children who had been fully vaccinated, the researchers found."

 

7 percent to 52 percent effectiveness is ABYSMAL.  That doesn't meant hat 52 percent of those who were vaccinated didn't get the flu.  It means that the DIFFERENCE between the number of vaccinated-who-got-the-flu and the number of unvaccinated-who-got-the-flu was 52%.    

 

The same abysmal efficacy is reported by the Cochrane Collaborative:

http://www.medicalnewstoday.com/releases/55507.php

Studies Fail To Demonstrate Safety Or Effectiveness Of Influenza Vaccine In Children And Adults

Main Category: Flu / Cold / SARS
Also Included In: Immune System / Vaccines
Article Date: 01 Nov 2006 - 0:00 PDT

"An independent analysis by the internationally renowned Cochrane Collaboration of worldwide influenza vaccine studies, published in the British Medical Journal on Oct. 28, concluded there is little scientific proof that inactivated influenza vaccine is safe and effective for children and adults. Citing the Cochrane Collaboration finding as well as methodological flaws in a child influenza vaccine study published Oct. 25 in the Journal of the American Medical Association (JAMA), the National Vaccine Information Center is calling on the Centers for Disease Control (CDC) to stop recommending annual flu shots for all infants and children until methodologically sound studies are conducted."

 

http://summaries.cochrane.org/CD001269/vaccines-to-prevent-influenza-in-healthy-adults

"Under ideal conditions (vaccine completely matching circulating viral configuration) 33 healthy adults need to be vaccinated to avoid one set of influenza symptoms. In average conditions (partially matching vaccine) 100 people need to be vaccinated to avoid one set of influenza symptoms. Vaccine use did not affect the number of people hospitalised or working days lost but caused one case of Guillian-Barré syndrome (a major neurological condition leading to paralysis) for every one million vaccinations...Our results may be an optimistic estimate because company-sponsored influenza vaccines trials tend to produce results favorable to their products and some of the evidence comes from trials carried out in ideal viral circulation and matching conditions and because the harms evidence base is limited."

 

This one has a fascinating interview with an epidemiologist from the Cochrane group:

http://www.time.com/time/health/article/0,8599,1967306,00.html

"We don't know what protection, if any, vaccines offer. I don't think that's a bad thing. Uncertainty is the motor of science. We need large studies to find out.

Why do you think such studies have not been done?
I don't know. We've known for years that we needed proof one way or the other, and governments have not taken any notice of this. It's an extraordinary situation."

 

This one, at least, suggests an alternative:  make sure vitamin D levels are optimal!

http://thevreelandclinic.wordpress.com/2010/12/09/forget-the-flu-vaccine-take-vitamin-d/

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#6 of 13 Old 09-05-2012, 09:48 AM
 
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Originally Posted by Justmee View Post

 

I'm worried now about the two month vaccines. They give 5 together here. They did not give me a hard time about skipping the hepB, but they are telling me pneumonia, and meningitis in particular will be important for him to have.

The two month vaccines were what my OHS child had his severe reactions to. I can't tell you which caused it, because he got so many at once.

 

There may very well be increased risk to your child from pneumonia and meningitis.


There may also be increased risk for vaccine reaction.

 

THEY DON'T KNOW. THEY'VE NEVER STUDIED PEDIATRIC CARDIAC CASES FOR VACCINE RISK.

 

The best compromise, in my mind, would be to get ONE AT A TIME.  But investigate the heck out of each one, and make sure that they are as effective as claimed, and that you know the risks.  Check out VAERS, which is the US database for reported vaccine reactions (which is completely voluntary, which is ridiculous).  Find out how many cases of SIDS were reported after each vaccine that you are considering.

 

Keep in mind, too, that vaccines are tested on formula-fed babies.  They are now finding out that breastfeeding interferes with the vaccine's effect on the immune system--which basically means, breastfeeding is doing its job at protecting your baby!! And that a breastfed baby is less likely to have those diseases severely ANYWAY.   (Sometimes the stupidity of scientists is mind-boggling--they are starting to call for women to temporarily withhold nursing to make the vaccine more effective, which is INSANE.)

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#7 of 13 Old 09-07-2012, 08:07 PM
 
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 They are not finding no such thing.

 

BF is interfering so  mild degree with some vaccine but it is temporary for a ridiculously short amount of time .

 

In good old times all babies were BF and they died from measles, and dihpihtera and other thing despite exclusive BF>

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#8 of 13 Old 09-08-2012, 02:25 PM
 
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Originally Posted by Alenushka View Post

 They are not finding no such thing.

 

BF is interfering so  mild degree with some vaccine but it is temporary for a ridiculously short amount of time .

 

In good old times all babies were BF and they died from measles, and dihpihtera and other thing despite exclusive BF>

 



In fact in the good old times a lot more kids died from scarlet fever and measles were basically just a nuisance.

 

@OP: Hope you can make the right decision and do research and don't let anybody scare you into anything


“The only true wisdom is in knowing you know nothing.”
―Socrates

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#9 of 13 Old 09-09-2012, 03:13 PM
 
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Children still die from measles every year. This is why Gates foundation put so much effort into measles vaccine and the mortality has been reduce by 74% worldwide.

 

 

Yes, children used to die from scarlet fever because they had no access to antibiotics. It is none issue now.

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#10 of 13 Old 09-20-2012, 01:09 AM - Thread Starter
 
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Thanks everyone for your suggestions! I have been checking out information and I'm still deciding what to do. We see the cadiologist again soon, so I will discuss with him before I make any final choices. I think I'm leaning towards doing the higher risk diseases one at a time and very slowly. Still not sure.


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Three big girls  twins.gif (10) + joy.gif (almost 9!); 

One little boy ROTFLMAO.gif(6) and a full on toddler diaper.gif  (8/12) born with TAPVR heartbeat.gif (repaired at 6 days old).

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#11 of 13 Old 09-30-2012, 02:01 PM
 
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My 14 month old is a heart baby. She was diagnosed with Tetralogy of Fallot w/Pulmonary Atresia shortly after birth. She had a BT shunt placed at 8 days old and her full repair at 6 months old. We declined the Hep B at birth. At her 2 month visit, we did first dose of Rotavirus and first dose of DTaP. I brought her back a few weeks later for the first dose of Prevnar13. She had a mild reaction to the Prevnar13. At her 4 month visit, we had to start the RSV shot. Brought her back a week later for the second rotavirus and second DTaP. She had a moderate reaction to the rotavirus so I decided we would discontinue that series. A few weeks later we did the second dose of the Prevnar13 and she had a moderate reaction so I decided to discontinue that series. Her second and third doses of the RSV shot landed her in the ER (not technically vaccines, but relevant to our heart babies so thought I would add it in). She had her third dose of DTaP after her repair surgery and had a moderate reaction to it. Based on her history of reactions, we are discontinuing all vaccines indefinitely. I specifically talked to her surgeon about this after her repair and his words to me were "In all things now, you should treat her as a four-chambered heart. If you are comfortable making that choice for a child with a four-chambered heart, then you should be comfortable making that choice for Ava." Her cardiologist and I agreed that based on her history with the RSV shot, she would discontinue that series.

 

My thought process in allowing the vaccines that I did were as follows: I allowed the Rotavirus because at the time, she was shunt-dependent and if she contracted a GI bug that caused to become dehydrated, her shunt could clot up and she would have died. End of story. While we were waiting for her repair surgery, we needed to help her avoid contracting respiratory illnesses so even though the DTaP does not provide full coverage immediately, I thought it was helpful to get something going. Same with the Prevnar13. In all cases, her reactions were stronger than just crying, irritable and low-grade fever so I felt that the risks of the reactions to the vaccines were too great at that point.


Annie wife v2.0 to DH and joyfully parenting DSS 18 jog.gif, DSD 15 knit.gif, DSD 14 banana.gif, DSS 12bikenew.gifand heart hero DD 2superhero.gif. angel1.gif 8/2010

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#12 of 13 Old 10-06-2012, 11:11 AM
 
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So my DD is not a heart baby, but she has multiple medical problems stemming from an anoxic brain injury at 4 months.  I took into account the likelyhood of what she would be exposed to in & out of the hospital, as well as the area.  Due to her trach, she is at higher risk for pulmonary diseases.  I talked with our specialists (we have lots), and said, I am going to selectively vaccinate on a delayed schedule.  What are the most important vaxes for my child and why?  I asked Neuro, Pulm, Cardio (we had not been cleared at the time), PM&R, and our pediatrician.  2 of them told me I needed to vax on schedule.  One told me delaying vaxes and giving them one or two at a time was a good idea, and then gave me his recs, based on the fact tat I was breastfeeding and what antibodies would cross over into my milk.  The other 2 gave me their priorities.

 

I took all the info, and the guidelines for the CDC, and came up with my own schedule.  The one thing that was stressed to me about the antibodies in breastmilk, was that you have to receive simultaneous exposure.  In other words, if both the child & you are exposed to a child with Chicken pox, you will start producing more antibodies and pass that through the breast milk.  If the child is exposed and you are not, or you are feeding frozen milk from prior to the exposure, there will not be as many antibodies passed on.  Since DD was always with me and I tube fed fresh EBM, I did not worry about it.

 

We also discussed vax shedding and synced my DS vaxes with my DD, so I do not expose one to a disease I have just vaxed the other one for.


Wife to M , Mommy to DS aka Captain Obvious  (06/06) and DD aka Lissalot  (03/09, anoxic brain injury)
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#13 of 13 Old 10-06-2012, 11:25 AM - Thread Starter
 
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Thanks for all your information. We see the cardiologist again next week, so I will discuss with him. It's so hard to get all the facts and everything straight. I just want to do what is best for him, what gives us the best chance of getting through this winter without him getting sick. I really don't want to be in the hospital with him again. He's been through enough to last a lifetime.


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Three big girls  twins.gif (10) + joy.gif (almost 9!); 

One little boy ROTFLMAO.gif(6) and a full on toddler diaper.gif  (8/12) born with TAPVR heartbeat.gif (repaired at 6 days old).

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