My baby has Complete heart block

In my 22 week scan my baby girl was diagnosed with complete heart block, I am now 27 weeks pregnant and am really struggling with the unknown, we have been told the future is uncertain for her but with each passing week I’m a little more hopeful. Does anyone have experience of what the future holds? Will she be delivered early?how long in hospital? will she have a pacemaker? Her heart rate is been 50-60but structurally sound. I didn’t realise before I fell pregnant that I have antibodies as my two other girls are heart healthy, we are so scared for the future, just looking for other people who have gone through this 


7 Comments

Heart Block

by Pacemum - 2019-01-01 10:50:02

I am a mum to an 18 year old who has what is known as complete heart block. She has had a pacemaker since being a baby and does very well and is able to do most other things that her friends do. She is currently applying to university to become an nurse herself.

It can be vary scary to learn that there is a problem with your baby during a scan. It is better to know about any medical problems then not to know as your baby will get the right medical help from birth.   The hospital will be preparing for the birth of your baby by having the appropriate medical help available at the birth.  The hospital may decide to induce a couple of weeks early to have medical help on hand at the time of the birth.

The question of if your daughter needs a pacemaker from birth is a decision that the medical professionals can answer.   There are alot of children who have pacemakers now and the technology has improved greatly.  If she does need a pacemaker then in my experience the operation itself will take approximately 2 hours however there will be anaesthetic to recover from.  How long your daughter stays in hospital depends on the monitoring the hospital wishes to undertake.  If she does need a pacemaker expect at least one overnight stay in hospital for the first one. 

Happy New Year

Sue

congenital av block

by Tracey_E - 2019-01-01 11:11:09

Check out this discussion from two weeks ago. Your story is so similar to the other poster I checked to see if you were the same person! The two of you may want to connect. The post also includes my lengthy response about living with CHB. I'm 52 now, on my 5th pacer, healthy and active. Technology is a million times better now than it was when I was diagnosed in 1970 so your baby will have many advantages I did not.

https://www.pacemakerclub.com/message/34339

Wrong Link

by NiceNiecey - 2019-01-02 03:32:55

Out of curiosity, I wanted to read the post Tracey linked but apparently it’s not the right one. Perhaps you can use the SEARCH function to find the post she’s referring to or Private Message Tracey for more help.

For the record (and to be completely honest), I would be terrified if I was told that my unborn baby had complete heart block (or ‘heart’ anything!!!). I’m amazed that they can even diagnose it in utero. But how fantastic that they can! What a miracle. I’m sure she’ll do beautifully, especially with an attentive mother like you. Another great benefit of being diagnosed before birth is that you and she will get a lot of extra attention! After she’s born, they’ll check her over and over and over! Nothing will be missed. They’ll be prepared for her birth, as Pacemum stated, which is another wonderful thing.

Keep checking in with our little club. There is so much to be learned from this group in addition to ongoing support.

Niecey

complete congenital heart block

by dwelch - 2019-01-02 04:06:03

I am 51 now, was born with heart block.  Pacers were not as common as now, and they didnt look for this then.  I was pre-teen when it was first discovered and 19 when I got my first pacer.  I am on pacer number five.  There is nothing wrong with a lifetime of pacers if that is what is required. 

Heart block is easily solved by a pacemaker, the electrical connection between the upper and lower chambers is broken in a way that they do not beat in a smooth rythm, so the heart has to work harder, and that is not good long term, gets too big and muscles walls too thick.  The pacemaker can easily repair (replace) that connection.

They didnt even know what caused CCHB when I started this journey.

You have come to the right site, I am so happy a parent has already replied.  There are a number of us patients that have this at this site, and it really is no big deal living with a pacemaker.

Find yourself a good doctor, one you trust, and then trust the doc you found.  They will know what device to choose, the brands are all good, there isnt a good vs bad of the major ones. I have a broken lead from my first replacement, these days apparently (reading posts at this site) it is not uncommon to remove them now.  The tech, tools, etc are so much better than 30 years ago.

As Tracey_E said your baby will have many advantages we didnt have.

Have your (her) doc show you how they can tell it is heart block in the ECG.  Have them talk you through where it will be placed if she gets one as a child, and where as an adult, (if the remove the old device/leads or not) how they will know when it is time, right away or years from now, etc.  If you and the doc cannot communicate well, find one that you can communicate with and can understand and answer your questions. 

Realistically though, life with a pacer has this initial transition from without one to having one.  My understanding is if you start as a child they may put them in a different place than an adult, so there will be that transition into the adult location, after that it is a pacer every 10 years give or take a few, recovery is measured in days to weeks (some parts of it days, other parts weeks) , the rest of that time you forget its there, an annual checkup, but with these boxes you can take home now, maybe that will change.  Replacement surgery is generally outpatient, couple of hours and go home, few weeks of recovery and see you in 10 years...

If she does end up with a pacer, she likely cannot be a welder or work in the power industry, too close to big generators, power lines, transformers, etc.  That and taking hits to the site where the pacer is are her only limitations in life as far as her heart/pacer is concerned.  Can have a normal active life. Other than recovery time after a surgery she cant use her pacer to get out of gym class.  (without the pacer though if she has heart block then yes, can get out of gym class or other simlar activities).  Okay maybe not wrestling nor football, girls can do what boys can do no reason they cant play football, but you really dont want to get hit where the device is even with pads.  The device is cased in metal, and under the skin its like pinching your skin with pliers.  Painful.

 

 

fixed link

by Tracey_E - 2019-01-02 10:51:01

guess it works better if the entire link is there :o)

https://www.pacemakerclub.com/message/34339/compete-av-heart-block

2nd Degree Av Block

by Brettmalec - 2019-01-04 02:25:33

Hello! I was born with a Type 2 Second-degree AV block But was not detected in my case until I was 2. I was monitored Until I was 7 and then had a pacemaker implanted because my heart rate had dropped to 18 bpm. I don't have experience with a Complete AV Block but I hope this information is helpful as I'm still going strong 10 years later! Getting my second Pacemaker in 3 days! 

Your baby girl will be just fine!

25 weeks pregnant going thru the same

by Gc9719 - 2019-05-25 05:44:36

Hi I'm in the same boat my baby girls heart rate is 69-72 I just seen the specialist today all they will do is weekly monitoring for hydrops scary thing is she said there is the slightest fluid in her heart already and being that I'm only 25 weeks pregnant it's not a good sign. It's so hard to stay positive and taking it day by day is the worst. At Kaiser they said that they really won't do anything before 34 weeks as far as a c-section do to poor prognosis.

You know you're wired when...

You always have something close to your heart.

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My pacemaker was installed in 1998 and I have not felt better. The mental part is the toughest.