4 month old daughter diagnosed with HCM

[marche81]

Hello. The pediatrician discovered a murmur last month in my 4 month old. I took her in to the pediatric cardiologist, and found out she has HCM. He said that it CAN be fatal, but if the heart remains how it is, and it is attributed to genes, than there is only 5 percent chance it will be fatal to her. We are going to take a trip to visit a HCM specialist a few hours away from here hopefully within the next month, and have blood work and tests ran on her. I dont know how to handle all of this. I am hoping someone in here has had an infant diagnosed with HCM, and can talk to me about it. She is such a tiny baby, I cant imagine her not living out a full life. I have cried until there are no more tears. Please let me know if you have had or someone you know has had an infant with HCM, and let me know the story. Please pray for us. Thank you.

[Linda]

Re: 4 month old daughter diagnosed with HCM

We will be praying for your precious little one and the entire family. I'm sure you will hear from someone who's infant has also had HCM. We've had several who have posted here. You will find all to be very supportive. I know it will be a difficult wait for you till next month. Please keep us posted. Linda

[Burton Borrok]

Re: 4 month old daughter diagnosed with HCM

Dear Marche81,

First; calm down. The world is NOT coming to an end.

Second; Private Message Lisa Salberg to set up a time when you can phone and talk with her. Her office days are usually Tuesdays and Thursdays. She can help you quite a bit I’m sure. She can probably answer all your questions and concerns. She can tell you what the appropriate tests would be for an infant. She can probably help you find a pediatric cardiologist who is an HCM specialist - in you area. I don’t know where your doctor got that 5% from, but I believe it to be far from the truth. Lisa will have to ask you a bunch of questions, such as how many of your blood relatives have HCM? How many suffered sudden cardiac death? - And questions like that, to ascertain your daughter’s likely exposure. But to tell the truth, with common sense care, old age is what kills almost all HCM people - (Discounting Accidents, Civil Unrest, and Acts of War, of course.) I was told I had a murmur and an athletic heart (today called HCM) as far back into my childhood as I can recall. I’m now 71 and still chugging along fine.

Have you and your husband gotten echocardiograms yet? Do either of you have HCM? How about brothers, sisters, parents, grandparents, uncles, aunts, cousins? Now’s the time to do some digging instead of falling apart. I’d also suggest reading all about HCM at the HCMA home page, and also check out some of the previous postings. There is a lot of information here.

Things to do – Things to do. My best regards, and please keep us posted as things unfold.
Burt

[Lisa Salberg]

Re: 4 month old daughter diagnosed with HCM

Please do not panic. I would be happy to talk with you over the weekend. send me a private message (use the button above where it says "you have no new messages) that will bring you to the PM. send me your phone number and I will call you.

I know you are scared, but we are here and we WILL do everything we can to help.

Lisa

[SheliRenee]

Re: 4 month old daughter diagnosed with HCM

Hi Marche81 -

My son was diagnosed when he was an infant. He just celebrated his third birthday this past March. We were first told that Keanu had biventrical hypertrophy. When he was six weeks old another echo was performed and we were told that not only were both ventricals still thicker than they should be, but the septum was thicker, creating an obstruction just below the mitral valve. I got on the computer and searched for as much information as I could. During that search, I found this forum which has been wonderful. There are so many wonderful people here who are willing to share and listen and support you. There are other parents of children with HCM here also who, I'm sure, will be willing to talk to you also. Definitely get in touch with Lisa - eventually you will understand why everybody sings of praises for her - and take the time to go through the other threads on this site. Feel free to send a private message any time you want. I would be willing to talk on the phone if you'd prefer... Remain calm and remember that most HCMers live a long and fulfilling life. We're all here for you.

SheliRenee

[marche81]

Re: 4 month old daughter diagnosed with HCM

Hello again everyone. Thank you all for the wonderful support.

Well, I was (and still am) a little worried that it may not be genetic. However, today I called the cardiologist that saw me while I was pregnant with my HOCM daughter (I went in becuase of palpitations), and they diagnosed me with MVP. Well, I called that office back today to request more information on my diagnoses, and they told me my septum was 1.3 thick at that time, but they thought that was due to my pregnancy. Can the septum thicken during pregnancy and go back down to normal? Any thoughts on this? I am hoping and praying I have HCM so we can rule out any other disease for my daughter. Going back to the cardiologist this Friday to see what they have to say now that I am not pregnant.

Thanks again to you all!
Marche

[Lisa Salberg]

Re: 4 month old daughter diagnosed with HCM

It surely sounds like HCM. Welcome to the club that no one wants to join!

Be well,
Lisa

[marche81]

Re: 4 month old daughter diagnosed with HCM

Hi everyone! Just a quick update. I am headed to San Antonio for a second opinion to see if I have HCM. My cardiologist told me that I do not, but after recieving my measurements and diagnosis, Lisa feels that I need a second opinion. We are really praying and hoping I have it so we know how Kylee got it for sure!

ALSO, Kylee wore won of those monitors for 24 hours the day we found out she had HCM, and we finally got the results back from it today. The Dr. said everything was perfectly normally. So, today has been a much better day for us than the past couple of weeks!

Hope everyone is doing well! -Marche, Joseph and Kylee

[Reenie]

Re: 4 month old daughter diagnosed with HCM

Good luck!

Reenie

[jakesmom]

Re: 4 month old daughter diagnosed with HCM

Hi there - am new to this - my preemie 20 day old son Jake was just diagnosed with HCM. Did you ever hear back from anyone, and what did they say? I just posted a new intro message about 1/2 hour ago and hope to get some responses. I'm terrified. This does not sound like fun, but it does sound controllable.

Debbie

[marche81]

Re: 4 month old daughter diagnosed with HCM

Debbie,

PLEASE email me at [email protected] . I would love to talk to you more about the disease. I am not the best at it, but I have learned alot from my daughter's doctors, Lisa (president of this organization) and others.

Marche

[Tigger1]

Re: 4 month old daughter diagnosed with HCM

Marche,

Our prayers are with You and Kylee. Everybody here has a connection with HCM in one way or another. We are here to help You and Kylee, and to support You.

Stay strong and keep a positive mental attitude...

Tigger1

[marche81]

Re: 4 month old daughter diagnosed with HCM

I just wanted to update everyone about Kylee's situation. Kylee is now 9 months old, 10 months on Sept. 20!!! Shes growing like a weed (and starting to walk already)
Anyways, I took her in to see the ped. cardiologist last week, and the echo showed that her left ventricle and septum has not changed in thickness. The Atenelol totally takes away her mild obstruction, and the murmur too. The doc told us this is all good news, and she is doing wonderfully. We are still trying to get down to San Antonio by the end of the year for my stress echo. We are taking Kylee in to see Dr. Towbin again next summer, so we will visit with him once a year. She will continue seeing her ped. cardiologist here in Dallas every 3 months until she reaches the "honeymoon" stage as Dr. Towbin calls it, then we will probably stretch her appointments to about every 5-6 months.
I hope everyone is doing well. Stay healthy.

[Pam Alexson]

Re: 4 month old daughter diagnosed with HCM

It is so great to hear that things are going well and your baby girl is thriving . Thank you for letting us know. Now we just have to get you squared away. Hope all turns out well there too.
Best Wishes.
Pam

[Lisa Salberg]

Re: 4 month old daughter diagnosed with HCM



HEY!

Thanks for the update!

Lisa