I hear you.

I wish I could say something that would help. There's nothing to say. I am sorry for the pain and the uncertainty and the difficulty you are going through.

This is a hard burden to bear. I am sorry that I have no practical advice to give you regarding your son's condition.

I've not been through that, but I hear your fear and anguish. Do the docs/hospitals recommend a support group? Sometimes the Children with Special Health Care Needs (CSHCN) programs in each state (though CA is likely in rough times right now) have a parent-to-parent support program, just for parents of kids with specific diagnoses.

I'm sure there is another mom out there who would be your mentor/friend/supporter through this. I hope this helps you to find her.

Sending prayers and positive thoughts. I know it's not much, but it's all I've got.

I hear you too, Vera. Take care of yourself, too.

If you're a church going person, go. Is there a support group possibly on-line for parents of children that have this or other childhood diseases? Find one somewhere. Do you have a therapist you can go to that deals with crises or health situations? Find one. Do you have a best friend? Call him or her.

In any case, take it 5 minutes at a time. Breathe. Enjoy your child. Do what you can when you can and then stop and rest. This disease may not have a serious manifestation. Your child may have the best outcome possible. Do not waste time.

I know you're scared, but you are going to be okay.

denese

I'm sorry. I can't imagine your pain and fear.

I'm temping in the cardiology department of a major medical school and just yesterday met a sweet pediatric cardiologist who insisted I show her the facebook video of my granddaughter beginning to crawl.

That's sort of appropo of nothing, I know, except that working around this sort of thing has a tendency to make me think a bit casually about desperately serious things like heart transplants and other kinds of cardiac disease. I assure you, that's only because I'm an admin temp and know nothing. The hands-on people aren't the least bit casual about it. But they do it all the time and they're amazing. They may be total schmucks day-to-day but put a patient in front of them, even talk about patient stuff and they are all business, all focus, suddenly brilliant.

I think it's good to channel your fear and your grief into learning everything you can about what your son will need, what he can get, what you can give him and who to get it all from. Who does the most and the best with this condition? (Check the UC system - I know Davis, LA and SF have good cardiology departments.) Are there parent support groups, an association? You have to be his fierce advocate.

But don't do like someone I know who knew when he was 6 mos. that her kid would need a kidney transplant. She was such a control freak, so protective, so involved that by the time he was transplanted at 13 she had pretty much destroyed him psychologically and emotionally. She probably would have done that without his medical problems but they were an excellent vehicle to allow her to let loose all her worst traits and impulses.

Here: http://www.4hcm.org/newbiew/118380.html - this is the HCM association. (Still haven't learned how to link, sorry. You'll have to copy and paste.) I have a sister with an ugly condition and the comparable association is a huge resource. I hope this one is, too. The url I pasted goes to their "newly diagnosed" section. I hope it's helpful.

This is so horribly cruel, and one of those examples of how unfair life can be. When I read this I thought, "Oh no, she has already been through so much this is intolerable." I just wanted to hold you in my arms even though I have never met you in person.

You have come to the right place! Most of the people here have some kind of problem, many psychiatric issues or substance abuse issues. This is an incredibly suppportive group, and they know what it is like to deal with serious problems. You should start posting a lot, and you will get a lot of support. Pm me anytime if you feel like communicating.
He is still young, and it is possible that he will do better than they think.
You will both get through this. You have a lot of people here that are eager to help. Take care!

My grandson was born with holes in his heart and it was really scary for all of us. I met lots of different people with babies who had some kind of heart defect. I know it is hellish and I am so sorry your son and your family have to go through this experience. Most of the families that I met did find an appropriate medical resolution for their problems and I will pray that the same is true for yours.

OK--now for some possibly good news! I have the same diagnosis as your son (9 years ago when I was 50) Ihave been part of a 5 yr national study and never thought I'd live to see the results.
After heart failure and a few years of serious dragging, I was about to kick the bucket so I had a Septal Myomectomy---and WOW!! What an upgrade-like from a beat-up VW to anew Lexus. I'm come back from the dead.
I've traveledall over the world, with a happy, open heart, and a coumadin monitor. Miracles happen. Also, because you know how sacred your time with son is, you have the gift of consciousness-most parents donot. Love and savor the moment. And document it. Keep an open heart, embrace joy, and know that your son could cheat fate. I have!
Remember not to let diagnosis become a HEX on your love and joy.
One last practical thing. I have taken CO-Q 10 since my diagnosis, and my heart has actually shrunk closer a normal size, despite
doctors shaking their heads.
You are a Spiritual Warrior. Your son is lucky to have you in his corner.

Oh, Dear! How awful! I am not a great believer in the MDs and their ilk. More of a Christian Scientist. And I've found it to be very effective -- that our tiny minds are nothing compared to the immense healing power of Divine Spirit. I am praying that he might heal and that you will find the strength to deal with this.

I know that you would switch hearts with your child in an instant.

I'm not belittling your worry in any way. I would never do that. But, can you try, just for a few minutes, reminding yourself that "right at this moment" my child is fine. It's kind of a one-minute at a time that leads to one-day-at-a-time. I'm not saying you don't deserve to be scared--you do. And I would be hiding under the couch if I were you. But, what your son needs is for you to be not afraid, to be strong for him.
And I'll send you my strength to add to yours. Hang in there.

You are not alone.

Not exactly that condition, but my younger brother had something similar, requiring open heart surgery at 12. We were told he would not see his 18th birthday, guaranteed. He is now 51 years old. He struggles, has a pacemaker, but perseveres.

The success record for cardio methods, pharma and surgeries is one of medicine's triumphs, one of the majestic human stories, period. You have every reason to hope for breakthrus, and life, for your child.

Keep writing. We will respond. My greatest hopes, for you and your family.

I will be praying for you and your family. As you can see, you are not alone. There are many here who care and a few who have similar stories and can relate. Blessings to you!

Ask your doctor to give you a referral to a heart surgeon that specializes in Pediatrics at Johns Hopkins hospital in Baltimore. If they can't give you a more detailed account of what you're up against and a hopeful prognosis, then no one can.
This is the best rated hospital in the country with the best diagnosticians and research people...
If you can, call them..go to their web site ..johnshopkins.com, send them an email and make arrangements to take your son back for consultation...if you have to mortgage the house, do it!! You won't be sorry...
You shouldn't have to go thru this alone and from what you've said in your post, you're not getting too much support from your local doctor.
Johns Hopkins is your answer! Don't waste a minute!
Good luck and God bless..

A big thank you for all the comments, as you can tell, I wrote this at a very weak moment...but I just had to post it. I was somehow compelled.

I am surprisingly touched by this; stuff I needed to hear. More than one person used the word "advocate" which is part of my Mom Mantra "got to be strong, got to think clearly, got to remember, I'm his advocate". He's only got me (his father, my husband, for those of you who haven't read me previous, left when I was pregnant; a sidenote on him, even though he has never seen his son, he has agreed to the heart screenings that the cardiologist wanted. What a champ! No support from him for 2 years but he comes through on this, you could have knocked me over...)

Your comments reflect my actions: I do cherish every moment, I do want to give him as much of a childhood as I can, I will not treat him differently, I visualize that his heart is perfect, I pray and pray and pray.

Thanks again.

Vera, adding one more message of love and support. Fear and uncertainty are such incredibly difficult emotional burdens. I don't have any experience with your challenge, but we've faced at least two difficult diagnoses in our family that have been "This changes everything" moments. I can tell you that with intention, many of those changes can be for the good. Even though you wouldn't have chosen the path, you are nevertheless grateful for the love, friendships, growth, and gratitude that you might not have experienced otherwise.

That one prayer sentence of yours is so devastating and true - wishing all good things for you, your family, and your sweet baby boy.

There are always supprt groups out there for you, so you don't have to go this alone. This is one I found googling.
http://groups.yahoo.com/phrase/hypertrophic-cardiomyopathy

Stanford has great info on their page too.
http://stanfordhospital.org/clinicsmedServices/COE/heart/DiseasesConditions/hypertrophicCardiomyopathy/

Best of luck to you and your family. :-) I have lymphoma so I know how devastating a major illness can be at first. Of course, it's me and not my child, but still, it's more than just normal life. And, yes, you are his advocate, so take really good care of yourself and be sure to take breaks from worrying and have some fun. I wish you and your child the very best as you begin this journey.

All I can add and I am sure you have thought of this is to teach your son how to survive with his illness. Write everything down also questions, answers, test results, everything. Then let him live and enjoy life to the best of his ability. My prayers and thoughts are with you.

Your strength and positive attitude will make all the difference. This is a CRISIS, so try to stay calm- ad you will make the best decisions. You are in my thoughts and prayers.

There is something you can do, pray and pray often ask friends to say prayers for your son. I know I will, May God be with you in your time of need. God never gives us what we cannot handle, and read some Depak Chopera, it is very helpful to be in the moment, ask family and friends for help with small things, laundry, grocery shopping, I will hope you hear some positive results.

My grand-daughter has Rett syndrome( another disease from hell) but yet after the devastation she has shown me how to live in the moment and just hold hands and marvel at our presence in this dimension. Please try to stop your thinking mind for a few moments and be aware and present to the gifts,peace and happiness your child is teaching you. Grandma, Cheryl P.S. I wish I could sit with you and hold your hand but I know you can do this for your child and sometimes that is the most important thing to do in this whole world!!! My presence is with you!

I hear you. And I am so sorry. I can't imagine anything more terrible for a parent than the serious illness of their child. I hope treatment can be found that will help your son.

I've just begun this comment three times using the word heart, and finally gave up. Take many deep breaths and care for yourself. If you let "this" get a hold of you, you won't be able to be at your best for what you need to do and decide for your child. Just like in the airplane when the flight attendant reminds you to put the oxygen mask on yourself first.

Next I want you to think rationally about what you have already written above. Undiagnosed seemingly superbly healthy athletes who dropped dead from this condition in their TEENS.

Do you see where I am going with this? Okay, I'll make it more clear. The doctors figured out that your kid has it, way ahead of the game, with more tools at their disposal than any docs have ever had for this particular condition, and most likely at the very least they will be able to mitigate the effects of this syndrome and at the very best modern medicine will arrest any negative progression resulting in premature death as described earlier.

We are with you, Vera. Please stay with us and let us know how you feel and what is happening. Research on hearts continues and I do hope that you are able to keep that in mind through this truly difficult time.

Your pain and fear is tangible. If only someone could reach out and change the situation....I know your pain and fear and homestly, it's just something that you live with.
My husband and I lost our son about a year ago. You find yourself going through the motions of life and most days you wake-up and don't feel anything...You're just numb. We still rely on ambien to experience artificial sleep for those blessed six hours a day. Everyone has told us that it takes two years to find a place inside to put his loss but I don't think a polace exists.
My advice, from this side of the coin, live everyday to the fullest. Do all the things your dreamed of doing with him before he was diagnosed. Let him live free from your fears. Let him run and play and explore his world, because that is why he came to spend his time with you. Try not to focus on the worse possible end, those thought will only rob you of the joy that is still available to you and to him. Miracles do occur and your son may still grow-up strong and healthy and challenge you in ways that you just can't imagine at this time.
Always remember that life is a gift!

I am so sorry for you, your child and your family. I hope for the best for all of you.

I don't know if anyone else has posted this, but there is a Hypertrophic Cardiomyopathy Association with a website and they have an online community. Here is the address for the community:

http://www.4hcm.org/forums/

Knowledge is a powerful thing.

Knowing a diagnosis is a first step. Those who "dropped dead" often did so because they did NOT know. You are not alone. You admitted this in your blog by mentioning that others have been here before.

I can't speak to this particular disease but I'm guessing that you have found that you have strengths that you never knew you had. I have survived much and been there to help others through circumstances that at times have felt daunting.

Sharing is an important start. Whatever you do don't allow yourself to be isolated. No matter how isolated you feel. Letting others know about the pain you feel and the burden you carry is incredibly important.

I wish you and your son much strength. May you stay well and be incredibly strong for those in your family who need you now.

Do take care.

One other note; a web site I found extremely helpful during my Mom's hospital stay.
http://www.caringbridge.org/
When it became exhausting to call and give everyone updates I found this a great way to share information. Of course in my Mom's group of friends not everyone had access to a computer so I still made some phone calls. The web site made it a managable handful versus the many I or someone would have been expected to make.

There are a couple of web sites you might find refuge in as a way of meditation when it all seems somewhat overwhelming.
www.bettertobless.com
www.gratefulness.org
Both have been helpful to me at various times. I am not a religious person, more of a spiritual type, but find great solace in the gestures presented at these sites. You could invite people to light a candle for you and your son. I will before I leave the computer.
Again all the best to you. And do take care.

Dear Vera...I watched a program on the Discovery Channel not long ago about a 3 year old with a heart condition that was life-threatening..possibly like your son has..it was at Johns Hopkins in Baltimore.
He had a heart transplant...when he recovered, he RAN down the hallways, he was so jubilant that he was going home, cured of this awful affliction.
My gynecologist had the same thing..he always participated yearly in the Iron Man Marathon in Hawaii..a grueling physical test. He discovered this heart condition and saw a heart surgeon and he's perfectly fine today.

If you can, I urge you to get to Baltimore and have your son evaluated further...even if it's the 8th opinion, it always helps ...

I'm happy to hear his father is cooperating with you...good luck and God bless.

my heart goes out to you.

I will be praying for your son. just believe that your son will be healed and healthy and it will be so. Just trust in Jesus and believe. I will also being praying for your strength to get through this difficult time. May God be with you!

Read Ephesians 6:10-18 NKJ. I hope that scripture will help you! stay strong and believe! You have to...for your son!

I have no words of wisdom or advice. I can only offer comfort and support.

It is terribly unfair that your son has this condition and will have to undergo any pain and discomfort either as a result of the condition itself or the treatment needed to cure or control it.

However, because he has this condition, it is terribly fortunate that he was diagnosed at two years old -- and that he can be treated for it. This will ultimately allow him to live a better life that he would have been able to if the condition were not discovered until the worst happened.

Every day as parents we take delight in our children's personalities and quirks and growth-- and every day and through each night we try not to worry about the endless permutations of what could possibly go wrong. We try to keep the pit of anxiety at bay, for we all know that relatively good health today is no guarantee of anything tomorrow.

I am glad you posted. You are not alone. I think if you keep reaching out you will find the practical answers you need that will reassure you and direct you on how to be the best advocate for your child's needs.



All we can do is rejoice in the present moment, knowing our children are okay right now.

There is a wonderful group called Saving Tiny Hearts (http://www.savingtinyhearts.org/) that could probably be a big help to you. They deal with all kinds of heart issues for little ones and are totally up to date on research, treatments, etc. Good luck to you and your little guy.

My heart goes out to you. I have an inkling of what you are feeling. My baby had infant botulism when she was 6 weeks old, but it was unidentified for over a month while she lay dying. The grief and fear were overwhelming. I couldn't stand up straight because of the pain. At first I was lost, bewildered, angry and so frightened that I could hardly cope with the basics, getting dressed, eating... but then through sheer desperation and a sort of wild anger, I became very focused and very strong, competent and able. She lived and is perfectly healthy today. You, too, will do and become what you have to to get through this. And we ARE here behind you, willing our love and support across the miles. Keep us informed of his progress.

My heart aches for you. My family has also suffered through a devastating diagnosis of a child 30 years ago and my advice to you is not to give up keep searching for answers just keep in mind every persons diagnosis and outcome can be different. My prayers are with you and your family.

My heart aches for you. My family has also suffered through a devastating diagnosis of a child 30 years ago and my advice to you is not to give up keep searching for answers just keep in mind every persons diagnosis and outcome can be different. My prayers are with you and your family.

I can recommend a book--"This Lovely Life" by Vicki Forman--that may be helpful. Her situation isn't a precise match, but she does a beautiful job of describing her experience as a mother. Her Web site is http://www.vickiforman.com/.
All the best to you...

Love.
peace,
dj

Knowing that you and your son are in the thoughts and prayers of your family, friends and everyone who has read your post won't be enough. Your local library should have "When Bad Things Happen to Good People." If not, you can buy a used paperback online for as little as $.01. It was written by a rabbi who lost his 14-year old son to Hutchison-Gilford syndrome, the premature aging disease. Regardless of whether you are a religious person, an atheist, or "spiritual" (whatever that means), this book will help you find the strength and understanding that you will need in the very difficult years you have ahead of you. This book won't take the pain away, but it will help you live with it. And you are going to need every bit of strength you can muster for your son't sake, to allow him to live as normal a life a possible, despite your constant fears.

You can read the first three pages online at Amazon.com:
http://www.amazon.com/When-Things-Happen-Good-People/dp/0380603926#reader

We are here, listening, praying, sending good wishes. I am so, so sorry. If he's asymptomatic, perhaps this is correctable, controllable w/medication?

I'm so sorry to hear you're going through this. My sister-in-law's daughter was born with (at least) four different heart defects, and she's received a lot of support from the Children's Heart Foundation - http://www.childrensheartfoundation.org/get-involved/chf-in-your-area I don't see a chapter in CA, but they can still offer you a huge network of support and information.