[Septum size in babies]

Author: Krista Donnelly (---.nara.gov)

Date: 08-01-02 14:11

Hi,

I just found this site a couple days ago. On June 27th, my 6 week old son Seamus died. There's no official cause of death yet, but I found him not breathing with blood around his mouth, and he was rushed to the hospital. He ended up in the pediatric intensive care unit at Children's National Medical Center in D.C. He'd been without oxygen for about 30 minutes, the doctors guessed. He died two days later when we took him off life-support. But on the first day there, they did an echocardiogram on him, and the cardiologist took us aside and told us that he did have a "minor heart defect", that the wall between the chambers of his heart was thicker than normal. I think he said Seamus' measured 7-9mm and the normal was 4-6 mm (the details are a little blurry). He also wanted to check for metabolic disorders which he said are sometimes associated with this particular heart defect. (We should get the results in another month). He said the heart condition may have contributed to whatever happened to Seamus.

From doing research on the web, I think he was describing HCM to me. Does this sound likely? I see from other posts that other people have babies with HCM. What are their measurements? He called it "minor" so I assume it wasn't that advanced yet, and the true cause of death was probably something else. But now my husband and I are worried about future children. (Seamus was our first child.) How did other babies get diagnosed so quickly? Seamus didn't have any symptoms - he seemed healthy and was gaining weight.

Thanks for any help anyone can give.

Krista Donnelly

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[Re: Septum size in babies]

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

Date: 08-01-02 14:45

Dear Krista,

First, I want to tell you how sorry I am about your son. The loss of a child is terrible. I myself have a 10 week old daughter with HCM. We knew she had problems in the very beginning because she wasn't breathing. Did your son get to come home or was he in the hospital the whole time? I have contacted Autumn's (my daughter) cardiologist to request all of her medical records. When I find out what her measurements are I will let you know.

I don't know alot about HCM yet I'm still learning so I can't offer any advise, but wanted you to I was thinking of you and your family. My prayers are with you.

Laura Smith

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[Re: Septum size in babies]

Author: Sarah B-Board Moderator (---.client.attbi.com)

Date: 08-01-02 15:09

Dear Krista,

I'm so very sorry for your loss. HCM is genetic, but can be caused by other things in rare cases. You and your husband should think about getting echocardiograms on yourselves. HCM doesn't just cause the septum to thicken, the actual muscle cells are disorganized, so your baby could have had a fatal arrhythmia regardless of the septal measurement's "mildness."

If the HCM in your child was plain HCM --not due to metabolics, etc, then each child would have a 50/50 chance of having it. Having echos done on yourself would probably be a smart thing to do at this point.

I know everyone here is thinking of you and your family,

Sarah

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[Re: Septum size in babies]

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

Date: 08-01-02 16:00

Dear Krista,

My daughter Aspyn just passed away on the 15th of July she was 8months old. We found out about her condition when she was 5 months old. We would bring her to the clinic because she had a weak cough and sometimes sounded congested, this started from birth, but every time we took her in they would tell us it was viral. Finally we saw a Dr. who had never seen her before and she thought that she had a fast heart beat, from there they did a chest x-ray which showed her heart was enlarged. They did an Echo which showed the septum ws thick and the right side was larger than the left. I dont remember her measurements off the top of my head. After waiting about 2 weeks for the blood work we got down to MAYO where were told her condition was being caused by a metabolic condition. Through out the whole thing you would have never guessed she was sick at all, she was alwys happy, smiling...and just a wonderful baby. They were convinced that her conditions could be controlled by medicine, but sadly the medicine was not working. Her metabolic disorder took over and caused her heart to get very bad. This all happened within a matter of hours. We still dont know the actual cause and dont know if we ever will. They did an autopsy, but we wont know the results on the biopsy's for sometime. We were told that our chances of having other children with these conditons is 1 in 4. (Aspyn was our first also).

I hope some of this information helped you, I am very sorry about your loss. You to are in my thoughts and prayers. If you have any questions feel free to contact me.

Stacy Block

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[Re: Septum size in babies]

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

Date: 08-01-02 17:01

Krista

I have a

7 month old baby girl with HOCM. She was diagnosed one day after birth. The neonatoligist detected a heart murmur right after birth so our pediatrician ordered an echo. The echo was done the next day. That is when the cardiologist dropped the bomb. At birth her septum measured 12.5 mm at its widest. Her septum now measures approx. 15mm. The cardiologist tells me this is minimal growth in her septum considering she has doubled her birth weight. She takes 3cc inderal per 8 hours. She has undergone blood testing

for various disorders and is now being scheduled for an MRI. We don't know what the prognosis is for our little girl but can only pray for good health. I have 3 other children that were echoed the same day our baby was diagnosed. They were fine but we have been advised to continue getting them echoed every 2 yrs. My husband and I also had echoes but they were clear. I am very sorry for

your loss and will pray for you and your family.

God Bless

Michelle

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[Re: Septum size in babies]

Author: Krista Donnelly (---.lnh.md.webcache.rcn.net)

Date: 08-01-02 20:03

Thank you everyone for replying. Seamus seemed healthy and normal up until that morning. He was a vaginal delivery, apgar score of 8, and we were discharged after the standard 48 hours. He wouldn't breast-feed but was gaining weight steadily from bottle-feeding. The only thing that used to concern us was that he would sound funny after eating - like he needed to clear his throat.

My husband's getting an echo on Monday because he's been having chest pains. The doctors think it's just from the stress of the situation but are making sure. I guess I need to talk with my insurance company (Blue Cross) to see if they would cover it for me since we don't have Seamus' diagnosis in writing yet. It's hard just sitting and waiting for test results and autopsy results.

Krista Donnelly

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[Re: Septum size in babies]

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

Date: 08-04-02 19:49

Krista,

I am very sorry to hear of the loss of Seamus, I know that this is a stressful time for your entire family. I assume you are still waiting on the autopsy report,so there is no further information on his condition. I think you have done a wonderful amount of detective work so far. There is a good likelyhood you are correct that HCM is involved. The numbers of infant deaths related to HCM are still unclear, due to recent changes in CDC procedures more children who die in the manner your son did will be required to undergo further investigation as to the cause of death. I am telling you this so that you do not feel so alone in your waiting... I truely think that many more infants die from HCM or HCM related conditions, I am just sorry we do not know more yet.

If I can help with anything please call the HCMA office.

Regards,

Lisa

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[Mild Hypertrophy in 18 month old]

Author: Amy Nierman (---.tnt4.seymour.in.da.uu.net)

Date: 08-14-02 01:30

At my sons 18 month check up he was diagnosed with a murmur. We had an echo done at the local hospital but it was read at Riley's Children's Hospital in Indianapolis. The doctor that read the echo told our family physician that my son has mild hypertrophy of the septum. The doctor at Riley wants to wait 6 months and do another echo to see if my son has grown out of it, if it has gotten worse, or see if it's just stayed the same. Is this normal procedure? The doctor made reference to the fact that it's hard to read echo's of someone that young.

Thank you,

Amy Nierman

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[Re: Mild Hypertrophy in 18 month old]

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

Date: 08-14-02 15:19

Amy,

I would say yes 6 months is rather normal. However if you see any changes in your son (which I doubt you will) call the doc and have the repeat echo done sooner.

I would suspect you will have a diagnosis confirmed in 6 months as it is very unusual to see this type of thickness in a child this age.

if you need anything please call the office.

Lisa