Infant having MVR

[miklsmom]

Hello to everyone, I am new here. My 8 month old son, Michael, (my earthbound angel) is the patient. He has had two heart surgeries and we are getting ready for #3 (scheduled for January 8th 2002). I am desperately seeking anyone who has had MVR this early in life. The risks are higher than normal for him because of his age and small annulus size. And even if all goes well, he will need at least 3 more replacements for growth. I would welcome any input about Coumadin and activities for children. His cardiologist has already informed me that regulating the Coumadin is quite a challenge in children under 2.

Thank you in advance,

 

[LUVMyBirman]

Wishing you and you son all the best.

I was diagnosed as a young child.....but did not require surgery until adulthood.

Would defiantly suggest a home test unit to monitor the Coumadin. It will save you a lot of headache, concern and wait time in the doctors office. There is a link on the site for the Protime home test unit.

It would be of importance to protect your son from head injury and or contact sports when he becomes of that age. Helmut is a must for riding that bike! This is something your doctor can best advise. My cardiologist suggests that I do my biking riding indoors on a stationary bike. Not much fun, but safer. It's not myself I am conconced about....it is the actions of others you cannot control. If it were not for that.... I would be back on my skis for sure. Though, I am getting pretty close to doing so, shhhhh.

Keep us posted.
Take care

 

[miklsmom]

Added Michael's Picture

Added Michael's Picture

Hopefully you can now see Mikey.

 

[miklsmom]

Michael's Pic

Michael's Pic

If his picture isn't here, I give up for now.

 

[Nancy]

Dear Jennifer-

Welcome to the site. It's a great place to talk things out with others who've been through similar things.

Mikey is adorable! So young to have so many problems, but it sounds as if they can really help him

No matter what the age of the patient, this surgery is quite an experience for the one having it and the loved ones who see them through it.

I've seen my husband Joe through many thoracic surgeries (he's had 3 open heart, he has 2 mechanical valves and had to have a repair on one of them, 2 lung surgeries and has a pacemaker) and he wouldn't be here if he lived in a different age.

So think about the lifesaving aspects of the procedures and it will help to put into perspective.

Hope to see you often here.

 

[sylviayasgur]

hi jennifer!
what a beautiful baby mikey is. thank you for sharing that photo with us.
welcome to this site. although i cannot help you with any advice concerning mikey's situation, we are all here to help see you through this difficult time. keep checking back, i'm sure someone else here will have some wise words to contribute.
meanwhile, ask questions, express fear, cry, whatever... we are here to listen and be with you. most of us have been in a similar position with a loved one and can surely relate and empathize.
so, please feel free to ask us for help, we're happy to give.
be well and God bless,
sylvia

 

[Jean]

Mlksmom

Mlksmom

Jennifer,

Can't begin to imagine what your family is going through, but do know that we on this site will be praying for you and your little guy. The surgeons can let God work miracles through them and the little ones heal so eagerly.

Keep us posted, we care and I hope someone here can offer you advice and knowledgeable comfort.

 

[Peter Easton]

Jennifer --

I have found that a lot of the people on the Ross Procedure listserve and website (go to myrossprocedure.com, I believe) have experience with infants needing mitral or aortic valve work. One of the most knowledgeable is Kathaleen Deam (Kathaleen Deam <[email protected]>), though others there know a good bit too -- and they are very welcoming, just as folks here are. Not all have gone the RP route, so there is openness to other needs and solutions. In fact, some time back I suggested that we might want to open up a forum on this site for child and infant mitral and valve replacement cases, but the response was that those concerns were better addressed on other sites like the Ross Procedure one.

Hope this helps,

Peter

 

[Kevin M]

I'm sorry that I have no information that can help you.

I just wanted to tell you that I had a friend in high school that had a few heart surgeries as an infant. His was a little different in that he had a hole in his heart, but he grew up ok.

He had no health related problems and led a very normal lifestyle.

He was a little thin and slightly underdeveloped, but that could've just been genes.

He had some nasty scarring around his chest and back where the scar grew with him, but it never got him down.

I no longer keep in touch with him, but I wanted you to know that he led a very healthy normal life despite the setback he had as a baby.

I'm sure this must be an awfully difficult experience for your family to go through. I wish you all the best.
Kev

 

[McCln]

Jennifer

Jennifer

Be rest assured that the doctors know what is best for your child. I had repair on my aortic valve at the age of eight in 1973. It was at a time they rarely did surgery on children. The bypass technique they used on me, well have been perfected and used on newborns that are just hours old, as you know now. I am 36 years old now and had the aortic valve replaced. I was never on coumadin till now. But be assured that modern medicine is changing everyday. And breakthroughs are almost daily. So hang in there honey, and your beautify baby will grow up healthy and strong. You be strong for him now. You are truley blessed.

Caroline
091301
Aortic valve replacement
St Jude's valve

 

[maxximom]

Michael is beautiful

Michael is beautiful

Michael is a beautiful baby!! I'm afraid I can't be much help to you in the info departmment..But I thought that you might like to know that my 8 year ols grandson Ian, was born with MANY heart defects and has had 3 surgeries by the time he was 6. He was born with a single ventricle, transverse Great arteries and a pulmonary stenosis. His surgeries were extensive he had a Glenn proceedure and a Fontayn proceedure as well as some shunting. You would NEVER know other than the scars on his chest that he calls his train tracks. He has grown very well (something that the doctors didn't expect to happen) To our knowledge he will need no more surgery. It is absolutly amazing what can be done today..with childrens heart prooblems. He had his surgeries at Oakland Childrens Hossp in Oakland Ca. There are websites that deal with Childrens heart proooblems..I don't know them off hand..but have you been there? I will look for you if you need me to.Although Iaaan didn't have a AVR..if you want I can put you in touch with my daughter..and perhaps she can help you in some way. BTW..Ian at this stage of his life only takes Digoxin, baby aspirin and a vasotech..no coumidin..although I think he may have after surgery. If you want to contact me my email is [email protected]
Good luck with Michaels surgery..Its just wonderful what can be done..that doesen't make the stress any easier for the parents ..we hate to see our babies hurting in any way..no matter the age. BTW..Ian can't wait to see my "train Tracks " from my AVR/triple bypass in Sept...Competition over scars..who would have Thunk it?? LOL!!
Joan