Hi all, I am 22 yrs old married 3 yrs to a wonderful man. We had our first baby 3 1/2 mo. ago and he's a miracle child. He's got Down Syndrome, EHK (epidermolytic Hyperkeratosis) a rare skin problem, hypothyroidism, along with previously having a HUGE VSD and 2 small ASD's.
He had surgery at about 2 1/2-3mo old (the 4th of Nov)... we were very worried but it was at LLMC or Loma Linda Childrens Hospital.
Our son could BARELY eat 2 oz in 1 1/2 hr every 6 hrs before surgery and relied on an NG tube after leaving the NICU (yes they can send you home with one, they just have to reliably train you first)
He went in for surgery, and upon the doctor speaking to us at the end of it, he said that the hole in my son's heart was among the largest he'd seen/repaired.
he told me that TJ would likely be on O2 for PH (pulm. hypertension) for amonth or so, well...
he had surgery on Tues, HOME by friday with NO NG tube! YAY!, And OFF oxygen by that following wednesday.
he's a miracle. he recently became hospitalized due to a localized skin infection (common with EHK) of a small spot on his incision. they needed to check for abcess, along with other stuff.. (as of last night for a 103*F fever)
But thank god it's not too bad. He's got a PIC line for antibiotics to treat the MRSA and he's gonna come back home.
I just wanted to let any of you who are worrying about heart issues your baby may have that they CAN come thru this. Just have faith. work with your child, and doctors and be proactive in their treatment! Ask questions, DEMAND answers if you don't get them....
And over all, YOU are the one who knows best for your child as long as your well versed in the problems going on.
A family can come thru these things, and it'll either make you break or make you stronger. FIGHT to be stronger, and to last thru things. We are excited for our son to be repaired (regarding the VSDASD's) and are only now hoping he comes thru his fever/infection fine, which they don't doubt.
Also with babies who've had HLHS (hypoplastic left heart syndrome) While in the NICU I became friends with several parent's/mom's who's babies had this horrible affliction and their babies had made it thru the first and most dangerous of the 3 procedures... I know that some issues/odds seem insurmountable. but they are not.
mommy to TJ (VSD/ASD repair 11/4 Down Syndrome, EHK, Hypothyroidism)
OMG your son sounds almost like my Christopher aka Cree Cree. He is now a happy 5 year old who when he was born they heard a loud murmur a grade 6/6. they did an echo to find out he had a hole in his bottom part ofhis heart a very large one. he went into surgery when he was 3 months old (childrens hospital Boston) and there they told us his heart was the size of a walnut and the hole in the bottom was the size of a dime. PLUS he had two holes in the upper part (PFO and a PDA) they fixed those since he was already having surgery. came home after 10 days (It took for ever to get him 2 ounces to drink and to keep him awake.) he came home only to go back into the hospital with MRSA and came home with the picc line. he still has cardiac issues.
I hope he is getting the RSV shots each month he could get really sick if not. Cree Cree Had RSV when he was 5 weeks old and almost died on us and then he got it again at 2 years of age but he had the shot to help lessen the effects of it and it worked he was only on oxygen for 5 days no vent this time.
Jist give him lots and lots of huge.
My daughter (who is almost three years old) was diagnosed in utero with complete av canal malformation. they told me there was a 70% chance that she would also have Down's but she doesn't.
Before she was born, her VSD closed on its own and she had her HUGE ASD corrected at six months by OHS.
I would like to also say to anyone facing this....it is very scary, but have faith. Find a support group in your area and concentrate on whatever your faith is.
The dr was trying to give me information on abortion, but I would not hear of it.
My daughter has hypothyroid, reflux, ezcema, allergies, and a possible connective tissue disorder. Her heart is STRONG and her brain is too.
She is the sweetest, smartest child I have ever met in my life, so please...never give up on your little ones if they are sick because they are stronger than we are!!
I want to start off by commending you on this posting. Understand that for 95% of all children born with heart disease (there are one in every hundred children born in this country every day, with heart disease) in this country have a treatment for their heart disease. Because of that fact most go on to live normal lives. There is hope for those children. For the unlucky 5% left, life doesn't work that way and for them, your post is something that doesn't set too well. I still think this post is an important one.
I remember when my daughter was in the PICU after having her transplant and I was talking to another mother of a 16 year old, who was having surgery, there was a young mother there who was listening in. (She had a 3mon old who was also having surgery) I remember she looked stunned at the two us talking and asked: "You mean these kids really DO grow-up???" Both of us turned around and said: "Yes, they most certainly do!" Thanks for your post!
Copyright 1994-2016 MedHelp International. All rights reserved.
MedHelp is a division of Aptus Health.
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.