My baby has Complete Heart Block

I'm 32 weeks pregnant and we were just told 2 weeks ago after my monthly regular check-up (which ended up to be 6 hours of additional hospital visits) that my baby has complete heart block.
She will require a pacemaker for the rest of her life.

They have already started me with a 4 mg dexamethasone steroid/day to help improve and protect the heart from further damage and monitored the heart rate of my baby weekly. So far the steroid has managed to help increase the heart rate but I'm still worried of the side effects this might have had on her brain development. We did a lot of research and studies have shown that the steroid has had some effects on the brain development of the tested animals.

Just wondering if anyone has gone through the same thing and I would appreciate if you could share your stories..

Many Thanks

10 Comments

CCHB

by Shell - 2010-05-08 02:05:45

Like TraceyE I also was born with CCHB. (in 1971) It was diagnosed when I was a month old but I didn't get my first PM until 4 years ago. I was monitored 2ce a year at Children's Hospital in Boston and they didn't think I needed one when I was younger. I had no restrictions growing up, did sports, was a cheerleader, had 2 kids. They only thing I need from my doctor was a letter when I went to get my driving permit saying I was ok to drive.

BABIES

by pete - 2010-05-08 04:05:43

All babies have a real grip on life. There have been many stories of babies getting pacemakers and they all seem to have done well. There is every hope your daughter will be just as lucky. Good Luck Peter

no experience with steroids but

by Tracey_E - 2010-05-08 10:05:04

I don't know anything about the steroids and their side effects, but wanted to let you know about life with CCHB. I was born with it but in 1966 they didn't have routine prenatal ultrasounds so I wasn't diagnosed until I was 6. I had a perfectly normal childhood. I'm on my 4th pm now, healthy, active, have two kids of my own, own a business... I haven't let anything slow me down! We have quite a few others here like me, adults born with CCHB who lead normal active lives. We also have a handful of teens who got pm's as babies, tho they're usually busy with their lives and don't check in too often. I just wanted you to know it's a bump in the road, not a road block. Good luck with your little girl!

Babies with Pacemakers

by tgbarb - 2010-05-08 11:05:41

I'm not a medical professional but I did work with someone whose niece had to have a pacemaker when she was VERY young and I know she did just fine without problems over the last 11 years or so.

I had to get a pacemaker for congenital reasons (although the symptons didn't start until I was in my 30's). I know it is different to get one as an adult but honestly it has been no big deal and I'm sure it will be the same for your daughter.

Barbara

Baby with a Pacemaker

by ottawamel - 2010-06-01 04:06:17

My son was born at 31 weeks gestation (in Sept.2009) with Complete Heart Block, along with other congenital heart defects. He had a pacemaker inserted at 5 days old( he weighed 4lbs). He's now a happy, active 8 month old. Aside from close monitoring by cardiology, he's a normal little guy. He's paced 100% of the time and will require a new pacemaker every 3-4 years.
Take Care and Best Wishes with your baby.

My Baby Has CHB

by teacherbrenda - 2010-09-27 02:09:57

My daughter was diagnosed with CHB at 22 weeks gestation and born at 32 weeks (in 1997 after steroid treatment). She will be 13 next week. She has had 3 pacemaker surgeries (the last being 6 months ago) and is a healthy, lively girl. She is advanced in all of her academic state testing and is the youngest in her class. She playes an instrument and is on the swim team. She is well adjusted and lives life like most 13 year old girls:)

Thank You

by rebeccaprance - 2011-04-19 09:04:20

Thank you so much for all of your inspirational stories. It really does help to read these stories and know that he will be just fine. We will actually meet with the Electrophysiologist next week to discuss pacing. He did a 24 hr monitor last week and his rate was ranging from 60-80. It is continuing to decrease each appt. we go to. And, he is very underweight for his age despite being on a higher calorie diet. Apparently, we are much closer to pacing.
I am curious about how all of this will work and what will it be like when he has a pacemaker. I've read where they do some kind of syncing through the phone??? Any information about the mundane parts of having a child with a pacemaker will be so helpful and appreciated!
Again, thanks for all of your stories and advice!

Updates on my baby

by ayap - 2011-04-19 10:04:02

Hi

How old is your son

My daughter is now 10.5 months and how time flies! :) She got her PM on the 3rd day after she was born. It was tough watching her tiny body being wheeled away to the operation room. She was a bit tiny too, born at 5.5 lbs at 36 weeks gestation. Her PM is currently near her tummy since she was so small but the dr said that they will move it closer to her heart once she's old enough.

She's currently paced at a fixed 100 bpm, there was apparently research being done that this rate is suitable for babies since they do not move a lot. We were told that once she's up and walking, they will change the pace to variable rate to accommodate her activities - we are not exactly sure how they will do that - whether it's simply by switching a switch or another operation to change the PM.

We went to have it checked at 3 and 6 months and the next appt is when she's 1. At 6 months check-up she had to wear the halter monitor for 24 hours and she was not too comfortable in it. I'm hoping as she gets older she will get used to it since I'm sure we'll be seeing that monitor often. :)

I was very worried at first about her esp being the first born and we did know anyone who is this young to have a PM but I find that this website has been very helpful.

Please do not hesitate to e-mail me should you have any questions athenea.yap@sympatico.ca

My baby girl

by Silla - 2011-07-03 03:07:37

I delivered at 37 weeks and watch carefully.Baby girl was born with second chb heart rate was low 50.On day 2 she had a pm and doing great so far.now her pm is on standby so it turns on when it goes below 50.No medicines.First time we did a over the phone reading wow the new technology.Amazing.How doc can turn pm on and off .I believe your baby will be just fine.

My daughter is 17 and had her first pacemaker at 5 months

by denicevz - 2011-11-11 03:11:21

My daughter was born with second degree heart block that progressed to third degree heart block by five months. This was in 1995.
My daughter has never known life without a pacemaker, yet has lived a normal childhood, and now a teen in her Senior year of high school. Yes, she has regular check ups, and many replacement batteries. She is now on her 5th pacemaker.
Having a pacemaker has never stopped her happiness in life. She is a sweet girl and brings joy to everyone around her with many friends.
As a mother, I can relate to your fears, and the trauma seeing your child wheeled into surgery. You may be in this unique club, will strive forward, and be that much stronger...
I cannot complain I have a beautiful daughter, an angel from heaven that God has sent me.

You know you're wired when...

You participate in the Pacer Olympics.

Member Quotes

I have had my pacer since 2005. At first it ruled my life. It took some time to calm down and make the mental adjustment. I had trouble sleeping and I worried a lot about pulling wires. Now I just live my life as I wish.