Hello all . . .

Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
G

gottabeleib

Great to be here . . . I have been reading these forums over the past few weeks and have found the support, kindness and positive attitudes that everyone maintains truly invigorating. I wanted to share a little of the journey my wife and I are about to begin.

We are expecting our first child in September and recently had deal with some challenging news. Our daughter, prenataly was diagnosed with mild AS, mild Reg and a moderate dilated ascending aorta. This has all been very overwhelming to say the least. I was frightened enough at the thought of being a father and responsibilities that come along, now this has really begun to test my resolve. I went from reading "what to expect when your expecting" to every available article on stenosis, CHD and anything else I could get my hands on. I am now more knowledgeable about the heart than I ever really wanted to be : )

The toughest part with all of this is the unknown. What will happen after the baby born? How fast will this progress? Can she live a normal life? Is there a good chance our baby will be needing surgery early in life. Scary stuff !

In baseball terms, I feel like we are down 3-0 and haven't even taken the field yet.

We live in NYC and have already met a few times with an excellent pediatric cardiologist who has conducted multiple echo's. Each time the echo results have remained stable and continue to be mild. I am generally a positive guy and having been trying my best to keep a positive outlook. I know I need to be strong from my wife as well, but I have been really sad the past few days and haven't been able to "kick it" yet.

If anyone has any thoughts or would like to share any of their experiences it would be much appreciated.

Best wishes,

Andy
 
Andy,

I would like to welcome you. I do not have any words of wisdom but we do have a number of members whose little ones are the patients. I am sure you will hear from them.

It must be very difficult to wait until your daughter is born to find out what needs to be done. However, be thankful that they know there are problems and can address them immediately. You are one step ahead in that respect.

Stay in touch and we will help you as much as possible.
 
Welcome Andy. I'm glad that you've found our "little family" helpful and supportive. I am very sorry that you are having to deal with this. But I'm also glad that today's technology is allowing you and your wife to prepare and not have everything be a big surprise upon your daughter's arrival.

Wishing you all the very best!
 
Welcome, Andy.

Gina mentioned that we do have a number of parents here of children with CHD but even more encouraging is that we also have a number of adult members who have had CHD from birth and are really amazing pioneers now in the area of ACHD (adults with congenital heart disease).

We are so glad to have you here and I'm sure some of these amazing people I am referring to will soon be here to welcome you as well. I know there are specific sites for congenital heart problems but support from multiple areas is good.
 
Andy, welcome, I know you are going thru a tough time and I will keep your daughter in my prayers and her parents. I'm Lyn and I have a 17 year old son Justin who was born w/ transposition of the great vessels, vsd, pulmonary stenosis and pulmonary atresia and a couple little things, his CHds weren't detected until he turned blue at one day, so I didn't have the worries while I was pregnant, Justin has had a few surgeries, but beside that he has really been able to enjoy life, he plays sports , is and eagle scout and has alot of friends.
I belong to a couple online support groups for parents of heart kids or adult CHDers, if you want to check out any of them just email me and I'll pass on the links, maybe someone else who's kid has the same CHd could help you or someone who will use the same hospital. Good Luck, Lyn here's a lin to Justin's page www.caringbridge.org/nj/justinw
 
Hi Andy,
I'm sorry you've had to join the CHD world. None of us particularly want to and I remember only too well how scary it is at first.
I'm mum to Chloe who's now 5 years old. She was born with a complex defect called complete AVSD, she developed a regurg, which eventually became severe and Chloe now has an artificial valve and is doing very well!
Although Chloe's condition is different to your little ones, I do know the stress of being a heart mum and am a member of several heart support groups and do know families with this condition. If you would like to talk with them or if I can help at all, please let me know.

Love Emma
xxx
 
Andy, while I don't have any experience with CHD my heart goes out to you & your wife. As you said, becoming parents is challenging enough without this curve ball. Make sure you trust your doctors (or find new ones), ask lots of questions and know that everyone here will keep you, your wife, and your daughter in their thoughts and/or prayers.

Cris
 
Welcome

Welcome

Hi Andy,
Welcome to the forum. This forum is a great information resource, as well as an incredible source of emotional support. We will be here to listen and encourage as you get ready to begin the doubly stressful journey of parenthood and learning about your baby's heart condition.
 
Thanks for the supportive words

Thanks for the supportive words

Thanks you all for responding . . . The supportive comments are very refreshing and are a great reminder that we are not alone in our new challenge.

At this point we are in "wait and see mode". After the baby born in the coming weeks we will meet with our doctors again and begin to strategize next steps. Hopefully things will remain mild and we will just need to monitor the status.

I will be sure to post again and provide an update after the baby is born.

Thanks again for the support

- Andy
 
Andy,
Welcome! The support you will find here is amazing.

I don't know much about the defect that is affecting your daughter so I can't comment on whether she will need surgery or not. But I wanted to let you know that I am an adult with CHD. I was born with Tetrology of Fallot (TOF) back in 1957. I did have surgery at 22 months old and at the time, the procedure that they did on me was experimental. I had to have my pulmonary valve replaced 5 months ago. Up until then, I had only had the one heart surgery. I have basically led a normal life. I get tired easily but I have always been able to participate in any physical activity that I wanted to.

Today's technology is so wonderful and your daughter has the advantage of all of those (including me!) that went before her. When I had my surgery in 1959 it was experimental. Today it is so routine that the pediatric surgeons can almost do it in their sleep. Just knowing about the problem ahead of the birth gives the doctors the lead time to prepare to deal with it. My ACHD cardiologist was telling me that they are even working on doing some procedures in-utero now.

I will keep you family in my thoughts and prayers. Keep us posted.

Diane
 
HI Andy, Just wanted to welcome you and your wife to VR.com! Glad that you have found the site helpful.

You must be feeling so overwhelmed and concerned about your daughter and her future. But at the very least, all the medical personnel are aware of potential problems and will be prepared to deal with them. Techology today is truly amazing. As they continue to say that the echos are consistent and everything is "mild" perhaps there won't need to be an intervention.

Please let us know when she is born and how she and your family are doing.

My best wishes for her healthy arrival are with you!
 
Welcome, Andy.

I went through a difficult pregnancy two years ago, and recall my husband pacing in the background during the birth. Fathers will do that, but I was in distress. He kept picking up his cell phone to call my dad who is a physician, as if he could reach through the phone and "fix" the crisis. This was our third child being born, and he is healthy today and I am doing well.

I have to echo everyone's comments re medical technology (and medications). It's amazing how many "miracles" we have in our VR.com community.

How is your wife feeling? I imagine that she's counting the days, and then some. Please let her know that we're thinking of her. The first birth is overwhelming on so many levels. I remember my firstborn's in 1997 ... I had been carrying small, and heard all kinds of possible outcomes for the baby girl. She was born healthy. When she arrived, my husband and I started crying in joy. All that worry was washed away in a single moment.

I have another friend who was told their son was going to be born with a limb defect. Nothing in the world could have prepared them for the news. The "defect" turned out to be a misreading on the echo!

I'm not suggesting that your echoes are in error, but hope you'll also consider the possibilities.

Keep us posted, OK? We'll be here to help you (and your wife) get through whatever may come. Waiting really is the hardest part! But worrying about tomorrow only robs today of its joy.

Blessings,
 

Latest posts

Back
Top