My unborn baby has heart block

I am 29 weeks pregnant with identical twins we found out at 24 weeks my 2nd twin has heart block doctors said we have to prepare for the worst and they can do stuff when our is baby born but depends when he is born and the weight of him I get scan two times week to keep eye on both babies our 2nd twin heat rate is stable at 50-51 which is low the doctors are hoping our baby will stay stable till I am 32-34 weeks then deliver the babies then I am so scared this being my first pregnancy I worried every day that I am going to lose one of our babies and not knowing what going to happen to our baby when he is born any advice or support would be great

6 Comments

Prayers

by PJinSC - 2016-04-04 09:04:09

I will pray that all turns out well.

PJ

congenital heart block

by Tracey_E - 2016-04-04 10:04:12

I know it sounds really awful and you're probably scared right now, but your baby has every chance of living a full, active life. AV block is an easy fix, the pacer completes the broken circuit giving us a normal heart rate. We have a few other parents here, hopefully they will chime in and ease your mind. We also have a few members who have been paced since they were babies and are now healthy, active and in their 20's.

As long as his rate holds its own, they will probably just watch after he's born. If it dips too low, they will give him a pacer. Do you have a neonatal cardiologist? They can tell you a lot more about the thresholds, at what point they would pace.

I was born with the same thing, but when I was born (1966) there was no ultrasound so my parents didn't know for several years, and they didn't give babies/children pacers unless it was life and death. My rate never went above 44 until I got my first pacer at age 27. I had a perfectly normal childhood, minus sports. If I'd been paced, I could have done a lot more. I'm 49 now, on my 5th device, healthy and active, mom of two, hike or ski most vacations, kayak and zipline every chance I get, Crossfit 5 days a week. No one looks at me and sees a heart patient, it doesn't slow me down at all.

Something to keep in mind, this is much harder on the parents than it is on the kids. We've never known any different so it's our normal. I'll even let you in on a little secret. For every time there was something I wanted to do that I wasn't allowed, there was probably another time I milked it to get out of something I didn't want to do. Shhh, don't tell my mom lol. The best gift my parents gave me was treating me like any other kid. They downplayed the things I couldn't do and focused on what I could do, so art and horseback riding instead of dance and soccer. I knew my heart was different but it truly never occurred to me that it was a bad thing or that I should be scared. As a parent now, I can appreciate how terrified they must have been, but they never let me see it. I'm not saying this is going to be easy, but I truly believe that there are much worse things we could have to deal with and there's no reason why this should keep us from living full lives. Best wishes to you and your precious babies.

Prayers

by BThankful - 2016-04-04 10:04:24

I am so sorry you have to deal with this. While a can't really offer any advice, I will definitely keep you in my thoughts and my prayers. Medicine has come such a long way and doctors are able to do so much to cure or improve so many issues. They will do everything they can to ensure both your babies have the best lives possible. I know this may sound impossible, but try to stay positive and not stress. You are doing everything you can for your babies and they feel your love for them. I hope everything works out for you and your family.

B

Children

by Pacemum - 2016-04-05 06:04:29

It is difficult to come to terms with the news that your unborn baby has a congenital heart problem. While it can be hard to digest the good thing is that the medical team and doctors can prepare for the arrival of your children and make sure that they are on hand to do all that they can for your babies. Although you have the worry throughout the remainder of your pregnancy it is better knowing and having the medical assistance in place than not knowing and not being prepared.

Not sure where in the world you are but my advice would be that if there is a facility or hospital that has a maternity unit and a children's heart surgery department on the same site, then, if at all possible, that is the best place to be when you give birth to your babies. Also, it is best to try and avoid a caesarean birth, if at all possible. It takes longer to recover from a caesarean and if one of your babies does get moved to another hospital or facility you want to be able to travel to your baby.

That said, do not worry if you do end up giving birth some distance from medical help. I was meant to give birth in the same hospital where the children's heart surgeons are based but my daughter made an early appearance and the local hospital managed fine and arranged for transfer as soon as possible.

They are able to do a lot more now and are able to implant in children at smaller sizes, if the need arises. Although the numbers of children receiving pacemakers are significantly lower than adults there are still probably more children living with pacemakers than you think. During the period 2014-2015 in the UK 91 children under the aged 16 and under received a pacemaker implant.

Hope the above is of some help.
Sue

Heart block

by Cally90 - 2016-04-05 08:04:11

Thanks for your comments i am under Bristol hospital and being scan two times week n there keeping close on both babies also they put me on steroids which is ment to help I am just hoping and praying everything stays stable and get to 32-34 weeks then deliver by c section

CCHB

by barnet38 - 2016-04-06 03:04:07

Like TraceyE, I was also born with congenital complete heart block. My parents found out about the heart block after my mom went into labor. She had an emergency c-section. I was monitored throughout childhood and received my first pacemaker at age 17. I am now 34 and just received my 3rd pacemaker a little over one week ago.

Everything TracyE said about her experience as a child was also true for me, although I was able to participate in some sports even with my heart condition. After receiving my first pacemaker, I was able to do many more athletic activities without having to worry about my heart. Now I am an active adult who normally doesn't even think about my heart condition, except to send in my pacemaker tracings every couple of months.

I hope this helps. Wishing the best to you and your babies.

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