Mitral Valve Replacement in HCM child

[Alison Whybro]

Hi everyone,
My daughter Anna has HCM with mitral regurgitation. Her cardiologist has told us that she will need a valve replacement in the next couple of years (if not sooner). He is trying to put it off as long as possible (without endangering her life even more).

At this stage my husband and I are doing as much research as possible.

We would appreciate hearing stories from anyone who has a child with HCM who has also had a valve replacement.

Thank you to everyone who contributes to this board - it is such a blessing to know that there is support just an email away, even though I am on the other side of the world from most of you!

Kind regards
Alison Whybro
Auckland, NZ

[Alison Whybro]

Anna is 7 years old

Hi everyone,
Forgot to mention in my last post - Anna is 7 years old.

Thanks,
Alison

[Linda]

Re: Mitral Valve Replacement in HCM child

Alison, Continue with your research and talk to your doctor about a valve repair rather than replacement. This is a great option with much more normal function than an artificial valve. The artificial (either mechanical or tissue) valve is fine if the repair isn't possible, but it's nice to keep your own when you can. The key is finding the best and most experienced doctor and facility/staff for your daughter. Have you made contact with Lisa? Best wishes, Linda

[mflanagn]

Re: Mitral Valve Replacement in HCM child

Hello Alison,

My daughter had her mitral valve replaced with a mechanical valve when she was 6 1/2 years old. She is now 13. She also had a myectomy at age 5. When she had the myectomy that was when they found her valve was misplaced (turned at a funny angle) and causing problems for her. They wanted to wait for as long as possible before replacing it (hoping for 5 years), but alas my daughter's heart said no and was only 1 1/2 years later when we had to replace it. She lives a pretty normal life. She takes coumadin daily and has blood work done monthly. She is restricted from competitive sports, but can still "play" with her friends in sports. She rides her bike, takes walks, swims, goes to the YMCA and plays around with friends. She is "normal" as her friends except having to take meds 3 times a day and has a different heart.

The surgery itself was scarry, but the doctor and nurses were so good at explaining everything and showing me everything that I felt pretty comfortable with what they were going to do. After the surgery, she was in the hospital for 6 days. Mostly because they had to find the right dose of meds to keep her PTT/INR in the correct range. We got out of the hospital and had to go back in 2 days for more blood work, then again in a week. Finally it was down to 1 time a month and has pretty much been since. Every once in a while (she's going through puberty) her blood levels get lower and we have to increase meds. Then she has to go for blood work a little more often, but it really isn't so bad. The doctors hope she will not outgrow this valve. The put a 25mm size in her small body. Its about the size of a quarter. They said she could grow to 5 feet 3 inches and not outgrow her valve. Well she is now around 5 feet 1 inch and we watch her heart very closely to see if she is outgrowing it. So far so good.

I hope this post help with some of your questions. If you want more information or have further questions, please let me know.

[Sarah]

Re: Mitral Valve Replacement in HCM child

Hi

Just an FYI --THe FDA approved a PT/INR monitor for home use and it is just a finger stick you could do at home. If you are having to take her blood more than once a months, you may want to look into it.

Insurance considers the machine a "durable medical appliance" so that is what you ask the insurance company if they cover and how much.

This is what I have: http://hometestmed.com/p_protime.asp

Take care,

Sarah

[Alison Whybro]

Re: Mitral Valve Replacement in HCM child

Dear Michelle,
Thank you for sharing your story about Krista, it really helps to know what other people have been through. Please tell Krista that it is kids like her who are my inspiration! It is great to hear that she is doing so well, (under the circumstances) and your son too. I hope the mechanical valve
continues to be okay for her and that she won't need another one. How does she cope with all the blood tests? My daughter is very good about most things but hates needles! I guess they get used to it.
One question I would like to ask you, is what factors made the doctors decide to operate on Krista when they did? Timing seems to be the big thing. Anna had a septal myectomy and resection of subaortic fibrous bands when she was 3 1/2ys. The surgeon did tell us that Anna's mitral valve was at an abnormal angle and that he accidentally 'nicked' the valve. This may be what is contributing to the problems now. Anna's cardiologist has told us that he is concerned about the degree of left atrial dialation (now 4cm) and that the valve is too difficult to repair. She has moderate septal hypertrophy, severe mitral regurgitation and persistent mild subaortic obstruction.
Anna keeps quite well and although she doesn't play competitive sport, she does like to run around with her friends, ride her bike etc. She just runs out of puff more quickly and gets more tired. The doctors are going to reassess Anna's situation in another 6 months. My husband and I are wondering if we should get a second opinion. We have a wonderful heart unit here in Auckland but we are thinking about taking Anna to Sydney, Australia. I guess it is for our own piece of mind more than anything.
Like you said, it is such a scary thing to go through and you only get one chance at it.
Thanks again Michelle,
Alison (Mum of Anna, 7yrs)
Auckland, NZ

[Alison Whybro]

Re: Mitral Valve Replacement in HCM child

Dear Linda,
Just a quick note to say thank you very much for replying to my post - it is appreciated. As you will see from my reply to Michelle, Anna's valve looks as if is is unable to be repaired, hence the mechanical valve option.
Kind regards,
Alison
Auckland, NZ

[Linda]

Re: Mitral Valve Replacement in HCM child

Alison, They were surprised that they could repair my son's mitral valve. We were expecting a replacement. When they got in there, we were all pleasantly surprised and had a repair instead. That's why I would want to know that the surgeon is extremely competent in replacement and repair. Best wishes as you move forward with all that needs to be done. Linda

[Alison Whybro]

Re: Mitral Valve Replacement in HCM child

Hi Linda,
Thanks for letting me know about your son - it has given me hope! That's why we are quite keen to get a second opinion as we would much rather have the valve repaired than replaced. Like you said, getting the right surgeon to do it is so important.
Thanks again and I'll let you know how Anna goes.
Have a great week,
Alison

[mflanagn]

Re: Mitral Valve Replacement in HCM child

Alison,

You asked when the doctors decided it was time for Krista to get her valve replaced. I have to tell you it was pretty scary. She seemed to be doing fine, then on July 3 1998 she grabbed her chest and said "my chest hurts mom, it really hurts." Of course we were out of town and at that time had no cell phone. I couldn't get a hold of her doctor. We got home and called, immediately she was seen by her doctors and that was when they started planning for the valve repair. She had a cath done in Dec which was the final say in needing to go ahead for the valve replacement. They did talk about possibly repairing it, but the surgeon's percentage for the fix and guarantee that she wouldn't possibly need more surgery was too small. I couldn't do that to her. So we made the final decision for the valve replacement with the understanding that it may need to be replaced once she was older. Well so far I think we made the correct decision and am very happy she has not had to undergo another surgery to this point.

As far as the blood draws, we do have a Cuagacheck machine here, but it is not giving us correct results. I can't trust the results, so we've gone back to the lab. They use a pediatric needed (much smaller) and are very quick. She too hates needles (even at 13). She is getting much better about going to the lab. I hope this helps some.

[Alison Whybro]

Re: Mitral Valve Replacement in HCM child

Hi Michelle,
Thanks so much for taking the time to answer my questions, it really is appreciated.
I was interested to hear that Krista was having bad chest pains prior to her valve replacement. Anna has been having quite bad chest pains these last few months. A couple of weeks ago I even rushed her to the ER department as I was so worried.
Anna went to see her cardiologist last week and he doesn't seem to be too concerned about the pains, which surprised me. Yesterday Anna came home from school and told me that she had bad pains in her chest at morning tea break, when she was playing around with her friends. She said that her chest really hurts when she breathes in.
I find this quite worrying and am not comfortable with the cardilologist telling us it is nothing to worry about. He thinks she is just reacting to her medication (verapamil) and having indigestion type pains (I don't agree....).
My husband and I are definitely going to follow up and get a second opinion. I'm having a few sleepless nights at the moment worrying about it.
Thanks again for sharing your story and I will let you know how we get on. Tell Krista that I think she is very brave to have all the bloodworks.
Kind regards, Alison

[Linda]

Re: Mitral Valve Replacement in HCM child

Hope you are able to get your second opinion soon. I'm sure it can't be too soon to help ease your concerns. It's so frightening to think of your child in pain and at a loss as to how to interpret it. Best wishes, please keep us posted. Linda