he might not survive, so the Dr's say

[mumofnoah]

My son Noah is 6 months old. He has an ASD and only yesterday I found out he also has a VSD. His blood is pumping everywhich way and his lungs (which are not mature because he was born 7 weeks premature) are not oxygenating his blood so there is 'dirty' blood going where it should go. He is desaturating to 60 with oxygen and because he is so small the dr's have said that there is a chance that he will not survive.

I am a christian and I believe with all my heart that God has given us Noah to take care of, to love and to protect. He has also given us Noah for a certain amount of time (which none of us knows) and so I am not accepting the prognosis as the end of the story. I am accepting what is going on in his body but looking forward to seeing him recover.

He is smiling, talking, trying to roll over, feeding really well and loves chatting to anyone who comes his way.

Is there anyone out there who has experienced the same dramas?? I would love to hear your storys

[Evans Dad]

Hello there, we had a similar experience with our little man Evan. Evan was born 5 weeks early with the same heart conditions. (He had AVSD, Atrioventricular septal defect) which is a fancy medical name for an ASD and VSD defect, the only difference was he only had one mitrol valve. He struggled in the hospital and destated regularly. Once he started eating, gaining a little weight and maintaining his temperature he did great. Although we came home with an NG tube (we had it for a hole year), and on digoxin and lasix he did great. He had his heart surgery at 3 months old. He is now 19 months old and is a great kid. He is strong and healthy and is off the NG tube and all of his heart medicines. He goes to a daycare with normal developing kids, and is pretty much at his age level. (he is not walking yet but getting close). We were told on occasions that his progress wasn't very good and death could be a possibility. One thing we have learned is that our special childeren are very resilant and tough, Evan has been through so much already, but he lives life every day with a smile. He wakes up happy and falls asleep with a smile on his face. Remember our kids do things on their own time.

Your son will be in our prayers, the will to live is usually stronger than a doctors prognosis.

Keep us posted
Clint, Jen and Evan

[Rhonda3]

My son Dylan also had AVSD, he had heart surgery when he was 5 months old. He is know 14 months old. Is Noah having heart surgery to repair his AVSD?

[Chris]

My heart goes out to you. I know that this has been an extremely stressful time for you. My daughter was literally on her deathbed when they finally did her heart repair on her three month birthday. At that time, she wasn't able to smile, lift her head, eat; all she wa able to do was breathe and had difficulty doing that.

Sarah had an AV canal defect. I was told she also had a VSD, ASD, and PDA. I always thought these were in addition to the AVSD. Other than blocked tear ducts and reflux (which was recently diagnosed), she hasn't had any other health issues.

The only thing you can do right now is enjoy Noah as much as you possibly can. Reflect on the blessings he has brought to your life as well as the lives of others. Being a Christian helps because we know that we will live together eternally. I wish I could lessen your pain. I have never lost a child but have come close and it was terrifying.

Hugs to you. Your family and Noah will be in my prayers.

Chris

[paulineuk]

Hello.
I am so very sorry to hear the possible future for Noah. When Nicky was born in August, 1988, no heart checks were routinely done on babies with DS and it was six months before he was found to have and AVSD which was inoperable. I was told that he would never live to be two years old, but he proved the medics wrong, I was then told her wouldn't live until he was five, then - he would never been a teenager. Well, he is 17 in a few weeks and doing really well considering that he has the AVSD, pulmonary hypertension, chronic lung disease, an oesophagostomy and is permanetly tube fed! So please keep positive thoughts for Noah and enjoy him while you have him. I have tried to cram as much of life and fun times I can into Nicky while he is still able to enjoy it. Sometimes I think we do too much and maybe I am putting him at risk but I firmly believe that quality of life is far more important than quantity but I pray every day that he will continue to enjoy his life for a few more years. I will pray for Noah and also ask my friends here in England to pray for him too and for your whole family.
Pauline UK.

[updowns]

Thoughts and prayers are going your way to keep Noah and your family strong.

Stella

[Emilysmom]

Awww Noahsmum, I am so sorry to hear the docs have such doubts, and I'm so glad you have strong faith. Noah will be in my prayers. Please know that I'm thinking positive thoughts and believing that Noah will prove those docs wrong. BIG hugs to you.
Please keep us posted when you can.
Susan

[ALLISA]

Hello there !

Well, first let me say that he sounds like he is doing fabulous for a baby the docs are ready to write off !!

My daugter (now 4) was diagnosed wtih TOF (Tetrallogy of Fallot) at birth. They wanted to do her surgery by 2 months of age and (hopefully with her weighing 10 pounds). Well she couldn't seem to get the weight up despite concentrating & supplementing her formula. She did have the surgery at 4 months and just barely 7 pounds....and came through with flying colors. They discovered that she didn't have the mishapen aorta that usually accompanies TOF.. and called it just a "simple" VSD & ASD. I say "simple" becasue as a parent it is so devestating to think of your child having heart surgery... but the reality is these procedures are done several times a day in any given hospital... and for the surgeons doing them, they are commonplace.

My advice to you would be sure that you are happy with Noah's doctors... get another opinion preferably from a Children's Hospital. I understand that he has other complications because of the premature lungs, but I am surprised that they wouldn't have already been discussing surgery dates.

You don't sound at all like you are ready to give up on your guy... so make sure you have a doctor who feels the same way.

Allisa

[coopersmoma]

Hi, My name is Wendey and my baby Cooper had heart surgery when he was 2 months old. Cooper was born 4 weeks premature and the morning of his surgery he only weighed 6 pounds! They wanted Cooper to be in the hospital for several weeks to gain weight but by day 3 he was losing weight and there was no more waiting on his weight. Cooper had an ASD, VSD and a PDA. He had surgery on a Thursday morning and we were home by the following Tuesday weighing almost a whole pound more than the day of his surgery. Cooper was in heart failure for a month and was on high doses of lasix, digoxin and some other heart medicine and can't remember the name of it. Cooper was on home oxygen and about a week before they did surgery he was dropping into the 60's and 70's. That is a really scary feeling knowing he is on oxygen and his level was that low!! I was fortunate to have one of the best Cardiac Surgeons in the States!! Cooper is a wonderful baby today and has not had any other heart problems. He does not take any medicine today except for his synthroid. My heart breaks for you though, knowing that you are faced with this. It is very hard to see your baby laying in a bed so helpless. I will pray for you and Noah and hope all goes well.

[MaggiesMom]

I'm sorry to hear what the doctors have said. I'd ask for a seperate, not from the same hospital or group, opinion as quickly as possible. Many times medical records can be faxed to other doctor's for consults. That incudes video they have from sonograms etc.

Check into and find out why they haven't done surgery yet. I've never heard of them not doing surgery when it was needed. I'm sure there are circumstances for that, but I've just never heard of it.

My therory is "question medical advice". You never know when it could be wrong! Unfortunately, it has been many times for us.

Take care. We're praying for your little man.

Robin M - Maggie's mom

[snickers71801]

Keep your chin up. When my daughter was born they told me that if she did not have surgery before she was 6 months old that I might find her forever sleeping in her crib. We had open-heart surgery when she was 4 months old. By that point she was gray and had moduled skin. She couldn't roll over or hold up her head. She will be 3 in eight days. The surgery was hard, but we were out of the hospital in eight days, including surgery day. Everything is possible and ds children are stronger than drs give them credit. I hope everything goes well for you and I wish him all the luck. He sounds like a strong little boy and he is not going to go without a fight. I will pray for you and him!

[shellk]

Sweetie I can relate to this.....
Kourtney had 2 different kinds of VSD's and multiple ASD's and a PDA..She was only 8 pounds and 6 ounces when she was 3 and hald months old...I was at the doctors everyday for wieght checks and and the heart doctors 2 times a week..They left her chart in the room one day and I read the whole thing while waiting..They had her listed as severe failure to thrive and they were really afraid that she would die from her lungs filling up with overoxygenated blood and them collapsing than they were about her heart..I sat there and read this and my jaw hit the floor..I had to feed her with an eye dropper and rub her throat to get her to swallow she was only intaking a max of 10-12 oz. a day and that was beefed up to 38 calories an oz. Well, when the doctor came in and checked her as the normally did had the EKG and all that done and he just looked at me and said see ya in a couple of days...I lost it, I said " Aren't you going to talk to me about what you guys think and what can be done..?" He replied, "Well, we can't do anything right now because she is so small. She needs ot gain more wieght." I tol him that I had seen children first born that have had this surgery and that if they can work on a baby with spinal bifida in the womb then you can fix my daughter..He tells me to calm down and we need to wieght..So, my reply to this was "You had better well fix my child and get her surgery scheduled or I will be in here the next time with an attorney intow and I will sue the pants off of this practice." Strangley enough he gave me a card for the surgeon and told me to call and schedule an appointment with him....Needless to say within 3 weeks she was in surgery and fixed and no other probelms with her heart....
I have learned to be nasty when need be to get done for her what needs to be done..I say straighten up your back bone and get on them like no one ever has..If you can't kill them with kindness, then start to threaten...They can fix him and I would fight about it...I had to fight and it was a long hard battle but with the grace of God we made it thru, and you being a Christian women should no that when in need he will give you what you need to fight.

Good luck honey and I will be praying for you and Noah.

Michele

Kourtney was also on Digoxin and Lasix and Reglan and Zantac and had that ashy gray look I have a picture I should dig out to post and show you she is sleeping on my couch and looks like it should be a picture of a funeral my dh will never look at those pictures we took the night before her surgery and I have a hard time myself.

[Sherri]

Adding our thoughts & prayers for Noah & your family!!

((Hugs))
Sherri

[meghans_mom]

Many prayers and hugs to Noah and your entire family.

I have to say how amazed I am at how strong all you mom's and dad's who have shared your stories here with what you have been to in regard to surgeries,etc...you all are truly special and wonderful people!

laurie

[YoshsMom]

Your Noah will be in our prayers. While Yosh never had cardiac problems, he did spend 10 weeks in NICU at birth and next Wed he will be having surgery to remove part of his liver that is growing too fast.

I agree with the others who say get a second opinion. I had drs talking to me about chemo before the biopsy was even scheduled and scaring me to death. The tumor was benign, but I will never forget the terror they put me through unecessarily.

Our children are a lot stronger than many doctors give them credit for.