Infant with pacemaker

Long post ahead...

While at my routine 20week ultrasound OB appt, we were blindsided with the news that our baby Anna was very sick and in critical condition. My OB immediately called the high risk OB and got us in within a couple of hours for further diagnostics and testing. After that appt, he immediately called the director of Pediatric Cardiology on his cell phone to get more ultrasounds and tests since she was in such a dire status. They concluded she has a complete heart block and her lower chambers are only beating at 50bpm vs the normal 130bpm. She also had three different types of hydrops (irregular heart beats) and vast inflammation throughout her entire body which is typically fatal when both are present. They immediately started me on a very high steroid protocol to hopefully save her. Fast forward to the following Monday and we returned to the Pediatric Cardiology dept and they completed another two hour ultrasound on her heart and found that the steroids had helped and she no longer had any inflammation or hydrops. Such a miracle of God!! She still has the complete heart block and low heart beat so she is going to be born via csection and getting a pacemaker immediately after birth. So for right now, we are getting used to our new normal which includes numerous weekly dr appts with lots of specialists.

Last week once the labs came back we also found out I have an autoimmune disease called Sjogren's and possibly Lupus too. The antibodies of the autoimmune disease was attacking Anna and created the heart block and other issues. My perinatalogist called one of the best rheumatologists on his cell and he squeezed me in immediately to take me on as one of his new patients, so I could begin the journey of dealing with this new diagnosis. So we are taking one day at a time and trying to get as close to 36weeks as possible. I'm currently 29 weeks. Apparently this only happens to 3% of women and of that 3% only 3% have difficulties during pregnancy. So its extremely rare where they only see about 5-6 cases a year.

Has anyone dealt with something similiar? Its overwhelming at times to think of what our new normal will look like. I was folding and sorting all her clothes for the nursery and just was overcome with emotions. I'm very thankful for our two healthy boys,  but can't help but wish this was all just a bad dream and our baby girl didn't need a pacemaker and a lifetime of heart issues. Any support would be greatly appreciated. 


2 Comments

Wow! And some adults stress over getting a PM

by AgentX86 - 2019-06-08 23:14:46

I certainly don't have issues like that but I can say that my grandaughter was born with her Aorta and Pulmonary arteries swapped.  At two days, she had open heart surgery to correct the condition.  She's now four, and "daddy's little terrorist" (i.e. a perfectly normal 4YO).  Be strong, your daughter is going to need you.

Children with pacemakers

by Pacemum - 2019-06-11 04:09:35

It can be vary scary to learn that there is a problem with your baby girl during a scan. It is better to know about any medical problems then not to know as your baby girl will get the right medical help from birth.  The scans that they perform before birth are more advanced now and can pick up soo many problems which previously went undetected until birth.

 There are some restrictions for children with pacemakers but you and your baby girl will soon adapt.  .Complications with pacemakers are rare and there have been no issues with any of my daughters pacemakers or pacing wires.

I am a mum to a 19 year old girl who has had a pacemaker since being a baby.   She does very well an is able to do most things that her friends can do.   She had her 4th pacemaker implanted in January of this year which should now last her over 10 years.   She has just finished college and hopefully will be going to university in September to study nursing.  

I hope that the rest of your pregnancy brings no other issues and the birth of your baby girl goes well. 

Sue

You know you're wired when...

Your license plate reads “Pacer4Life”.

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