Two year old son w/ BAV

[mlkyle]

Hello to all,

My beautiful and innocent baby two year old son was diagnosed with BAV when he was two weeks old.

We found out last week at his annual checkup that he has bulging at his aortic root at his sinus valsalva.

I am so frightened, scared, sad, anxious, horrified, etc...

Is there anyone out there who has a young child with this diagnosis? Should I be worried about OHS in his near future? I am already looking for the best pediatric surgeon.

Any words of comfort, wisdom, experience, etc. will be greatly appreciated.

Is my baby going to be okay?

 

[Freddie]

Hi and welcome to the forum.
There a few here who have young children, but until you hear from them, educate your self as much as possible and ask as many questions as you like, more knowledgeable people than myself will be around to answer anything that's on your mind.

 

[catwoman]

mlkyle:

Welcome! Glad you found this website.

We have several parents who have children either born w/ varying heart defects or who have developed acquired defects: gijanet, lynnw, briansmom, for starters. Janet's dtr, Katie, was born with quite a few cardiac problems, but not BAV.

You can search for their names in the members list under Community in the top toolbar and either PM (private message) or e-mail them. Lynn and Deane (briansmom) have been fairly frequent visitors; Janet drops in every so often.

We also have several others, but I haven't seen posts from them in a while. One mother (in Malaysia) has a dtr who had heart valve replacement at 2-4 months of age; that was several years ago. Haven't seen posts from her in a while.

 

[Superman]

Unfortunately there are so many different presentations of what appear to be the same congenital heart defect that it would be almost impossible to tell you exactly what to expect from your sons condition. Not what you want to hear, I know, but that's the difficult truth.

I was born with BAV, stenotic from birth, with a strong murmur (regurgitation). They were able to hold off on replacing my valve until two days prior to my 18th birthday. This year, almost 19 years later, my aorta finally needed to be replaced. Prior years had not shown any real trouble in that area. The aorta was normal. It is starting to show in studies that a connective tissue disorder that shows first in the aorta is a common aspect of BAV. It's not just limited to marfan's or other disorders.

I have four children, at least one (likely two) of which have or carry the gene for the same defect. My oldest has BAV showing two of three leaflets partially fused. He does not have an audible murmur and no limitations as of yet. My third son also has no murmur, but is just now getting to an age where they will be able to get a good look at his valve. In the past they've classified him has a "family member". This means that the valve is normally functioning, but does so some indication of malformation. My second oldest has a normal valve but a slight murmur. My daughter shows no symptoms but is too young to tell (five months).

I feel very fortunate that none of my children have any of the limitations that I had. The one that has it might follow the more normal course of needing his valve replaced in the fourth - sixth decade of life. The others may never need anything.

Your sons presentation is unique to him. Cardiology has a whole is understanding more and more about this condition with each year. Treatment options will continue to improve. I don't think there is any question that he will likely face surgery of some kind in the future. The best we as parents can do is get mentally prepared, be as strong as we can for our kids, and pray we're wrong.

Has your pediatric cardiologist recommended finding a surgeon at this point? What were their thoughts?

 

[Duffey]

Hi, and welcome.
BAV runs in our family, and our grandson was diagnosed with a BAV soon after birth. He's being followed by a pediatric cardiologist, but so far he's experienced no problems.
We have several heart moms on the site who are much more knowledgable than I am regarding your baby's diagnosis. At some point they'll stop by to share their thoughts. I'm sure they'll tell you that all will be well with your little boy.

 

[Superman]

By the way, both you and the father should get thoroughly checked out by a cardiologist. There is a chance one of you (although likely asymptomatic at this point) will show some indication of a similar defect.

 

[Lynlw]

Hi, My 21 year old son has Complex CHDs and has had several OHS the first at 10 days. I agree with pretty much what everyone else said, Every kid is different and we can't tell you how your son does , when he will need surgery ect , since alot has to do with how your son is as he grows. What I can tell you is having your baby have OHS is one of the most awful things to go thru as a parent, BUT that stats are getting so much better for most of the surgeries and even the more complex ones they are getting very good at.
What has your sons doctor told you? Have you been told to start looking for a surgeon or surgery definately will be soon? Unfortunately for children, the numbers are not as cut and dry as they are for full grown adults,(like a 5.0 annuerism needs replaced ect) since kids are all different sizes. IF they havein't recomended surgery, if you wanted to ask something I would ask how they will know when YOUR child needs surgery, what criteria do they use ect.
Also IF you are interested in joining a CHD group the best one I know of is the one at www.TCHIN.org they don't have a forum like this it is a email list, but the site also has alot of very good info. There is a small fee to become a member, but they will wave the fee if you can't afford it.

 

[mlkyle]

Lynlw,

How is your son? Thank you for all your information. Thank you so much.

Thank you to everyone for your responses.

 

[Lynlw]

Lynlw,

How is your son? Thank you for all your information. Thank you so much.

Thank you to everyone for your responses.

Pretty good, he gets tired easily, but still doesn't need any meds. but over all and considerring all he's been thru we know we are Blessed. There is a link in my sig that goes to his page we use when he is having surgery ect. (that I REALLY need to update so they don't close it)

 

[briansmom]

Hi,
My son was perfectly "normal" (at least as far as his health went) until he was 16 and his aorta dissected. As Lyn said, having a sick child can be traumatic. My son has had a very tough summer and I thought we were going to lose him. Thankfully, young people's bodies are so resilient that they can survive a lot.

I recommend that you find a team of doctors that you trust and can talk to - that would be his PCP, cardiologist and cardiothoracic surgeon. Ask them for their diagnosis and recommended treatment plan and what they would be doing if this was their child. then it's time for you to do as much research as you need to feel comfortable. This absolutely is not a death sentence for your son. Medical science is so advanced that they can fix almost anything - especially when you are proactive and catch it early.

I'm so sorry that you are in this position. The people on this site are happy to support you in any way they can. I'm not sure that I would have made it through some of my son's hospitalizations without being able to vent/whine/cry here. Everyone here truly understands your feelings unlike friends and family who love you but don't truly understand and who are going through their own emotional turmoil.

Please keep us posted.

 

[mlkyle]

thank you

thank you

Dear Deanne,

Thank you so very much for sharing your story about your precious son, your experiences, your advice...your encouragement...this is so therapeutic for me...I will be a better mother b/c of this...

Thank you...

Julie

 

[RI Mom]

Hi there,

I'm also the mom of a young child with CHD. Although not the same defect, my son was born with malformed mitral and pulmonary valves as well as AV canal defect. He has required 3 open heart surgeries so far and several trips to the cath. lab. It is a terrifying experience for us parents but most kids fare well. My son is 7 and is not limited much by his cardiac condition. If surgery is imminent, I would suggest finding a surgeon with a lot of experience with aortic valve repair/replacements at a good facility and go there for the tour to get your questions answered. There is a book I would recommend as well called "It's my Heart" published by the Children's Heart Foundation www.childrensheartfoundation.org which gives some good information to help prepare parents for their child's treatment.

Best Wishes! You are not alone in this!!

 

[mlkyle]

thank you

thank you

You have no idea how much I appreciate your words of encouragement and advice...thank you thank you thank you!!!!!!!!

 

[Lynlw]

Hi there,

I'm also the mom of a young child with CHD. Although not the same defect, my son was born with malformed mitral and pulmonary valves as well as AV canal defect. He has required 3 open heart surgeries so far and several trips to the cath. lab. It is a terrifying experience for us parents but most kids fare well. My son is 7 and is not limited much by his cardiac condition. If surgery is imminent, I would suggest finding a surgeon with a lot of experience with aortic valve repair/replacements at a good facility and go there for the tour to get your questions answered. There is a book I would recommend as well called "It's my Heart" published by the Children's Heart Foundation www.childrensheartfoundation.org which gives some good information to help prepare parents for their child's treatment.

Best Wishes! You are not alone in this!!

I think they are out of the book now, but you can still read it online http://www.childrensheartfoundation.org/publications/its-my-heart/english

 

[TXGal]

Julie,
I'm so sorry to hear about your son. My son is one month short of being 2 years old and has a BAV. I insisted on an echo at a young age because of my history and after a few echos they found he has BAV. It's so hard to know my baby has this, but I feel fortunate to know so we can keep an eye on it. What did his cardiologist say after your son's echo? Any support you need, we're here for you! My son is creeping up on his next annual exam ("nervous")

 

[mlkyle]

our boys

our boys

Dear Kristen,

Finally, I have found someone who knows what I'm going through!!!! Our beautiful baby boys...you would never ever know our baby has any heart defect! He just turned two in July. His BAV according to Dr. is working great. We are concerned w/ the bulging the echo found at his aortic root...Time will tell...until then, I need to stay positive...like you said, it's so hard to believe my baby boy has this...please keep in touch and PLEASE let me know how his annual exam goes.

Nice to meet you...and your beautiful son...

Sincerely,

Julie

 

[vhmoriarty]

Hello and Im so happy you found us. There are people here everywhere that will eventually getting around to find you and answering your questions a little bit better.

Myself was born with a heart murmur in 1980. My mother was told it would go away with age. At age 15 they were still able to hear the murmur quite loudly. I started seeing a cardiologist yearly and was told I woud be past child bearing years before OHS would be in my future. I am now 29 and have had two children and just now having to face OHS. My daughter was born with a Patent Ductous which closed not long after delivery at 30 weeks. My son passed away at 2 days old due to hypoplastic left heart syndrome. (born without the left side of his heart).

One thing I would like for you to ask your childs cardiologist is the flat out question of when, where and how long until he will have to have OHS. Sometimes they tend to sugarcoat things to parent. Dont let them do that to you. I was never ever told not to have children. My ped cardiologist said I would do just fine....well thats not the case and that is why my valve has detroiated so badly.

So even if you have to get second opinions for your child DO IT!

If you have any questions please feel free to ask me.

Also have they said anything about a gradient or a ejection fraction rate? If you can get those numbers, I can possibly help a little more also.

 

[Mike C]

I hope this helps a little to know that it is extremely rare for aortic dissections in kids, and in one sense its good you know so you can monitor as he gets older. its most dangerous when you do not know or are not monitoring.

This is a disease that, although you are born with it, it typically affects kids when they become adults.

Do as much research as you can and go to the best medical center you can. my 7 year old son may ahve it and we actually take him to a pediatric marfan expert even though its most likley bav.

I think he most likley is fine for a very long time and may never need surgery, if he does, he will most likley be much older and will get through it and live a normal life.

A echo what another said, you and husband and other family members need to be tested. Its likley someone else in family has this and your baby could save someones life.

 

[ALCapshaw2]

I suspect that Janet and her daughter Katie (a.k.a. gijanet) have the most similar background. See her profile in the Members List under "community".

She has settled on Dr. Bove at the University of Michigan as her favorite Pediatric Heart Surgeon. You can find his profile by Google Search which should lead you to the appropriate UofM site.

'AL Capshaw'

 

[mlkyle]

Dear Mike,

Thank you for telling me that about how aortic dissections are rare in children. That helps me breathe a little better...well...alot better...thank you! And my other two children had echos last week and they don't have BAV. My husband also had an echo...he doesn't have BAV; however his first cousin on his fathers side has two children who both have BAV...we think that is the genetic connection. Please keep me posted on your seven year old son. I wish you the best.

Thank you so much Al for your information.