[Make the Doctors listen to you!]

Author: Stacy (---.tnt21.atl2.da.uu.net)

Date: 07-29-02 22:40

Hi Everyone,

I havent been on the board for a while.....In April we found out that our 5 month old daughter had HCMA that was being caused by a metabolic and mitochondrial dissfunction. Our daughter Aspyn just passed away on the 15th of July. She was 8 months and 1 day old.

We were fighting with the docs here for about 2 months telling them that she was not gaining weight and her appetite had slowed down to eating only about 8oz a day. Aspyn was a wonderful baby who never acted like she had any conditions at all, she could be so sick and still have a smile on her face, so every time we took her to the doctor they would always send us home and tell us everything looked fine, knowing she had all of these conditions. Every time we would tell them she always looks good, but no one ever listened to us. So finally we talked to our cardiologist at MAYO who told the doctors here to admit her into the hospital and start feeding her through an NG tube and run blood work. After being in the hospital here for 5 days they finally flew us to MAYO. Things were looking up at MAYO, but the doctors there would not listen to us either, we asked them to do an x-ray and make sure everything loooked good, but they never did. After a few days there we were looking at getting discharged and going home but Aspyn started breathing funny aand we would call the doctors in to listen to her and they all thought she sounded fine. This went on all day before we got the head pediatrition in who finally got her hooked up to some machines and saw that there was something wrong. So she ordered a chest x-ray which showed her heart had almost tripled in size and was touching the chest wall and the right side had overflowed into the left side which was also getiing larger. They ordered some more blood work and found that her levels were going nuts. They said I could hold her and as soon as I picked her up she gasped and I yelled for the doctors to come back in. They called the PICU and transfered her over there, before we even made it over there they asked us to wait outside. After a good 2 hours they came out and told us that they had to recesitate her and that she was doing ok but if she made it through the night she would be pretty heroic. We finally got to go see her, and hold her hand. That night went and the next morning she was awake enough to hold our fingers and look at us, but they had to keep her sedated because of the breathing tube. She was breathing to much on her own at that point and causing her lactic acid levels to increase to much so they gave her a paralizing medicine. We thought at that point everything was going to be ok, but than her blood pressure would not stay stable on its own and she was retaining water so bad. They tripled her lasix to get the fluid off but her kidneys failed. After a very long night and a very hard fight she passed away.

Never in my life have a met a baby that was as strong as she was. Her strength kept us strong. We miss her so much and not a second goes by that I dont think about her. I also wonder if the doctors would have listened to us sooner if she would still be here with us. It doesnt do me any good to question it, but I thought it might help someone else. No one knows your child more than you, and if you think somethings wrong please, please dont let them tell youdifferant until they prove it to you. I kick myself everyday that I took NO for an answer.

We talked to the doctors the other day and they still dont know what actually happened and dont know if they ever will. We were also told that if we plan on having any other children that we have a 1 in 4 chance of having another baby with this same very rare genetic disorder. I always said I didnt care if I ever had any other children as long as Aspyn would be ok, now I dont know what I want except my little baby girl back.

I hope this story might help someone, I hope all is well for everyone, and I want to thank you all again for all the help you gave us when we first found out about her HCMA. Thank you again, this web site is a wonderful tool.

Stacy Block

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[Re: Make the Doctors listen to you!]

Author: Linda (---.wmnsmd.adelphia.net)

Date: 07-30-02 00:08

Dear Stacy, I'm so sorry to hear your story about your prescious little Aspyn. I pray for strength for you and your family to manage through this most difficult time. You are so right about making the right people listen, but I can tell you from experience that it's easier said than done. You know you were the best mother your daughter could have had and you did everything you possibly could. You've been through so much in such a short time. I hope messages of support will somehow help you all through the days ahead. Take care and know that many others of us are thinking about you all.

Sincerely, Linda

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[Re: Make the Doctors listen to you!]

Author: Stacy (---.tnt22.atl2.da.uu.net)

Date: 07-30-02 00:46

Thank you Linda for the comforting words, we really appreciate it.

Sincerely,

Stacy Block

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[Re: Make the Doctors listen to you!]

Author: Sarah B-Board Moderator (---.ipt.aol.com)

Date: 07-30-02 01:40

Dear Stacy

I'm truly sorry for your loss. From what you have said, though, it doesn't sound like there was anything anyone could do about preventing Asypn's heart from getting too big. Don't try and figure out what you want right now, just allow yourself to grieve. I know that when I had to mourn my father, I thought I would die if I let myself feel all the pain I had, but the reverse is true: only by expressing that grief and pain do you release it and eventually begin to heal.

my thoughts and prayers are with you and your family,

Sarah

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[Re: Make the Doctors listen to you!]

Author: Lisa Salberg (208.47.172.---)

Date: 07-30-02 11:41

Stacy,

I am at a loss for words, I am so sorry to hear of the loss of your sweet little girl. I recall when we spoke on the phone hearing her in the background, she sounded happy and playful. I know you did all you could to get her the help she needed, you did everything you could, and she knows it.

I wish that I could provide some answers as to "why"... I can not, not only did your angle have HCM she also had other metabolic disorders that complicated the matter. Someday maybe we will understand these diseases better to provide a better future for these children, but today that is still out of our reach.

My heart is breaking for you and your family; I only hope that you find some support and friendship here at the HCMA. Please know that I will never forget Aspyn, you see July 15 is my daughter’s birthday, please know that somewhere in the world every July 15th I will be thinking of your little angle and smile with the memory of the sweet little giggle I heard on the phone.

With lots of love,

Lisa Salberg

HCMA

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[Re: Make the Doctors listen to you!]

Author: Jerry Salzman (---.indy.rr.com)

Date: 07-30-02 12:54

Stacy,

I am so sorry. I could never understand what you must feel. Twice my oldest son scared me so much that he might not be around. Luckily he is perfectly fine and turns 8 next month. As for wishing you could do more, I think you did great. You did not take no for an answer. You should not dwell on whether you could have done more, because I believe you did as much as anyone could.

Jerry

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[Re: Make the Doctors listen to you!]

Author: LAURA SMITH (---.bardstowncable.net)

Date: 07-30-02 16:23

Stacy,

I am so very sorry about your precious baby girl, I myself have a very sick baby girl who is 10 weeks old who has HCM. I feel your pain and I will pray for you and your family. Again I am so sorry.

Laura Smith

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[Re: Make the Doctors listen to you!]

Author: Chuck (---.WLDF.splitrock.net)

Date: 07-30-02 16:31

Stacy,

I wish we could bring our loved ones back but take some solace in this time of extreme grieving that she is in another place now and some day you will see her again.

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[Re: Make the Doctors listen to you!]

Author: Bel (---.excel.net)

Date: 07-31-02 15:19

I was so sorry to hear about your little one. My prayers go with you.

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[Re: Make the Doctors listen to you!]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 07-31-02 15:27

Stacy -

I just want you to know that I have received many calls and emails about Aspen. Many of these people do not know what words to use to tell you how sorry they are for your loss. I told them I would let you and your family know that many many people care about all of you and are heart broken over your loss.

I know it is not much...but please know many people care .

Best wishes,

Lisa

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[Re: Make the Doctors listen to you!]

Author: Stacy Block (---.mis.prserv.net)

Date: 07-31-02 21:21

Thank you everyone for your thoughts and prayers, we really appreciate it. We are at a loss right now and really dont even know if we should share our story. I tell people about Aspyn only because she was the best thing that ever happened to me and I think her story should be heard. I am sorry to anyone who is going through this. Believe me I know it is very hard. The way I have been thinking about it is Aspyn made it to heaven in 8 months when it takes most a full lifetime. I know she is better where she is, and every time I look at a picture of her with her big smile and sparkling blue eyes......it makes feel really good to know she isnt suffering anymore.

Thank you all again for your kind words.

Thank You,

Stacy Block

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[Re: Make the Doctors listen to you!]

Author: michelle (---.proxy.aol.com)

Date: 07-31-02 22:09

Stacy,

I know it must be very hard for you to share your story with others. I have a 7 month old baby girl with HOCM. My thoughts and prayers are with you and your family during this difficult time. I am so sorry for your loss.

God Bless

Michelle