Any stories for parents to be

sorry to hear about your baby

by new to pace.... - 2023-09-10 22:11:07

One of the posters suggested that we do not use our real name and use a made up user name.  Also it would help if you at least filled your location.  As sometimes the answers that are given depends on where your county is.   

While you are waiting to hear your answer to your query. You might use the search box to ask your question.  Click on what looks like a magnifing glass next to 'logout'.

new to pace                                                                                                                 

Hi

by Tracey_E - 2023-09-11 10:52:21

We have some other parents as well as some young adults paced since birth. Hopefully they will chime in soon! Other than check ups, they are normal kids. 

I was diagnosed in 1970, when pacing was in its infancy and children were only paced if it was life threatening. I went through childhood not paced which meant very restricted activity. Kids today are paced young so can grow up doing all the sports and other activities I wasn't allowed to do.

I got my first pacer in my 20's. I'm 56 now, on my 5th device, am healthy and active. Most of the time I forget it's there. I have two grown children. CCHB is not genetic so neither of my children has any heart issues. Just the opposite, they've both super active. My youngest is a park ranger in summer and works at a ski resort winters, so visits with her are full of hiking and skiing. My oldest is a runner, visits with her usually revolve around a race. We completed one half marathon this year and have another planned this fall. I joke that I'm twice their age with a heart condition so they should take it easy on me, but they mostly just roll their eyes

Technology advances at lightening speed. I've seen drastic changes in the years I've been paced. Things that were untreatable when I was a child are easily fixed now. The weakest part of the pacing system is the leads, and leadless has recently become available and is getting more common. There is no reason to think your baby girl cannot have a bright future ahead of her.

Something to keep in mind, this is a lot harder on you than it will be on your daughter. I can't even imagine what my parents went through but they never let me see the fear. I knew my heart was different, but I grew up never knowing anything else and it never crossed my mind that different was bad. It was (and still is) my normal. One of the biggest gifts my parents gave me was always treating me like I was normal, though as a parent myself I know they had to be fighting the urge to wrap me in bubble wrap. I had a happy childhood. 

Prayers for wisdom for your doctors, strength for your daughter, and peace and calm for you and your wife. 

Worrying time

by Penguin - 2023-09-11 10:53:59

Hi Lucas, 

First of all Welcome! I truly hope that you can find some support here from other parents who have been in a similar situation. You must be very concerned indeed. 

 It's a practical suggestion, but if you know that a pacemaker or at least intensive care may be necessary when your wife gives birth is it worth speaking to the neo-natal unit to ask for advice e.g whether there is accommodation nearby for parents, what to expect, how to prepare at home for a child recovering from surgery etc.  They may be able to help you. 

Please keep in touch.  

PS: If you look under the 'Learn' tab, and select web links then scroll to the last section, you will find some charities who support people with congenital heart conditions. Hopefully they too can lend some support.

Hugs💓🩷

by Lavender - 2023-09-12 22:54:35

Parents awaiting their baby's birth shouldn't have to worry so much!

My first child was born at a time when we didn't even have sonograms. It was a total shock when he was born with heart disease. No preparation mentally or otherwise. The hospital didn't even have a neo natal unit so he was transferred to Children's Hospital. A cardiac catherization showed heart problems that couldn't be fixed. The technology just didn't exist yet. 
 

My son lived to almost age three then peacefully passed away. The technology he needed is now routinely available. 
 

You are living in a time when not only were they able to know in advance that your sweet baby will need care, that care is readily available! 
 

No one should have to experience this, but you are living in an age of great medical advances with tried and true treatments that will help. Your amazing baby will be cared for and live a good life. May God continue to watch over, shining light on this and putting all the right team in place for your precious newborn. 🌸