Just Wondering - Waco,TX

I worked with a lady whose brother lost their baby girl to a Congenital Heart Defect. They did have a heathy baby girl a couple years later. They have opened a foundation in their daughter's memory in Houston. The website is Bigheartfoundation.org. Maybe you can find some support or more information through the website.

God bless you! I wish you the best. We lost our first baby 11 years ago to a very rare metabolic disease and were fortunate enough to have a healthy baby boy a little over a year later.

I don't have any advice but I just wanted to let you know that I've prayed for you and your baby already. I can't imagine losing a child, but I can imagine how nervous and scared you must be. Good luck to you and your family.

God Bless,
J.

A.,

Here is a similar story.......when my mom was in her first trimester with my sister (before I was born), in 1972, they Dr. found that the baby had spina bifida and highly recommended mom terminat the pregnancy. My mom would never do that, so she just prayed and did what many say to do, and really "gave it to God" she truely let him control the entire situation and stopped worring about the out come, and just believed that what ever was to happen God sent her this child for a reason, problems or not. The Child was born in 1973, my sister Veronica, and the Dr. said she would never walk, SHE DID. It was very late, but she did. The Dr. said she wouldn't live to the age of 3. SHE DID. The Dr. said she would never be able to have children and SHE DID. She is now 35yr. old and has three wonderful children (two boys and a girl). That all being said I must also say, it wasn't an easy life....it wasn't all great wonderful stories always. She really had a lot of trials through her life so far.
In and out of hospitals most of her life. Many physical problems due to being paralyized internally, (no bladder control or renal control). And now as an adult she has more medical problems than anyone I know. However, this is only my belife and mine alone. My mom gave her troubles completly to God and was blessed with a wonderful daughter. My sister on the other hand doesn't give her troubles completely to God and she is suffering in more ways than she ever has.

First off, prayers are with you for a healthy and blessed pregnancy and birth. Secondly, my sister gave birth to a beautfil little girl (Waverly Grace) that had a heart disease - she had major heart surgery 2 days after her birth, God graced us with her presence for almost six months - she would be about 10 years old now. Most importantly, my sister has since then given birth to two other children (boy - Elijah (8 yrs) and a girl - Magdelyn (6 yrs)) who are extremely healthy with not a single sign of heart disease of any kind. May you find peace within for the loss of your baby girl - my sympathies.

My prayers go out to you and your family for your loss, and Heaven's gain. Congratulations on your new baby. I pray that God is with you and the little one looking out for you both.
Good luck and best wishes,
B. P.

Hi A.,

I certainly want to offer my support and tell you that you're not alone in your anxiety - it must be incredibly common among parents who've experienced such loss - at least that's what I tell myself when we consider having another child. We were fortunate with my son who was born in Nov 'O6 with a massive CHD. He is doing really well now, but the first year with him was so scary and unexpected that it's difficult to imagine going thru anything other than that. However that's an emotional response, not a logical one. I'm told time and time again that going on to have a healthy baby is obviously very common. We're meeting with a genetic counselor on Wed. to ask these very questions. I'm sure your 20 week u/s will take away so much anxiety and leave you free to fully enjoy the pregancy. You and your baby both deserve that!

A., My heart goes out to you and your family. I can say with a great deal of empathy how sorry I am for the loss of your baby girl. I too lost my first son to congenital heart issues back in 1989. It was so long ago but it sometimes seems like it was just yesterday. He was only 5 months old when he died, just like your little angel. It was a very difficult time and I had a lot of issues with God because I just couldn't believe that he had done that to ME. How could he take my little baby away from me? Well, over time I found that it wasn't something that he did TO me but, more of something that he did FOR me and for my baby. I was young and he was going to require much more care than I would have been ready to take on. As a 19 year old single parent I did the best I knew how and with a lot of family support I managed to love him and take care of him. He never got to come home from the hospital but he did get to go on to the best Home there is,Heaven.:) He passed away in April 1989. In the latter part of 1990 I found out that I was pregnant again and yes I was a little nervous, also. What I kept in mind was that my family and I had gone through so much hurt with the loss of my son that if God was going to bless me with another child, surely he wouldn't have me to go through the same hurt again. So, with a lot of positive thinking and a lot of prayers on April 1,1991 I gave birth to a healthy, extremely handsome baby boy! He has the deepest dimples you'd ever want to see. One on each cheek. His dimples,for me,represent one kiss from God himself and the other a kiss from his "Angel Brother". He is now 17 years old and about to gradaute high school. Again,on May 19,1993 I was blessed again with the birth of my healthy,beautiful baby girl. She is now 15 years old. She is joy and pain all rolled up in one. I AM enjoying the ride. :) I said all that to say, that there is life after death in more ways than one. I hope that my story in some way gives you what you need. Be inspired today and be blessed. God is Awesome!!! With Love, Tiff

I have worked at TCH for 12 years--and would recommend (without hesitation) that you have a fetal echocardiogram at 20-24 weeks to check for any congenital heart defects. Dr. Nancy Ayres or Dr. Carolyn Altman are excellent.

On a personal level, I had a first pregnancy with a severe spinal cord defect (child did not survive) and now have a healthy 2 1/2 year old. Be positive...but also calm your nerves with an excellent medical team (cardilogy--prenatal echo and perinatalogist--I saw Dr. Brian Kirshon). Good luck and contact me with any additional questions. (____@____.com)

A.-

Chin up girl! Some good friends of mine did just that- in Juneau Alaska, at that! Their first son was born with 3 congenital heart defects and a cleft palate to boot. After several difficult surgeries and a lot of travel he's ok, and now they're a family of four. They had a healthy baby boy about 3 years later.

You can do it! It will be ok. Stay strong, meditate on happy positive thoughts, keep walking, and pour all of your love into this one, I'm sure you've got lots...

All my best,
J.

Just would like to start by saying I'm very sorry for your loss. None of us can imagine what you've gone through. Congrats on your new bundle of joy coming soon! Remember that every pregnancy and every child is different. Good luck on this one, and don't worry! Let God handle it. He's good at that.
Have a great week! :)

I'm so sorry for the loss of your precious baby girl.

My daughter, now 5, was born with CHD. She ASD, VSD and Interupted Arch repair when she was six days old at Texas Children's Hospital in Houston. She is doing awesome now!

We also have a son, born completely healthy. Your OB will likely refer you to a pediatric cardiologist (perhaps even the ones that cared for your daughter) for a fetal echo at about 20 weeks into your pregnancy to check on this baby. My own pedi cardiologist assurred us that is it EXTREMELY rare to have two kids born into the same family with CHD. In fact, through my daughter, I have made 3 close friends who have CHD children. Two of them have sons with HLHS and they have several siblings between them, all born completely healthy.

After what you have been through, I am sure another pregnancy is scary, but I am sure it will go great and your son will love having a sibling. And remember, your son is healthy,so it is totally likely this one is fine too. You are in my prayers!

Hi A.
Just wanted to let you know that a good friend of mine had a daughter with a Congenital Heart Defect. She had 2 or 3 surgeries I beleive when she was very young. She is now a happy healthy 8 1/2 year old. You would never know she had those problems before. Congratulations on the pregnancy!

Have you contacted Texas Children's Hospital and asked for the cadio drs? They would be my suggestion because they aren't ob-gyn docs but they would be the ones that could probably tell you more about your child that you lost and whether there is a chance that the baby you are now carrying could have it again. I want to also express my sympthay on your heartbreaking loss. Texas Children's has wonderful doctors and they not only treat the child but the whole family so please consider calling them and they also have a web-site if you don't feel comfortable talking to them. My son has LVNC and we go down there all the time and when we are there, we are always treated wonderfully, all of us. Please consider it strongly.

Hi A.,

I am living proof you can have a healthy pregnancy and child after complications with a previous one. My sister was born with a congenital heart defect and died when she was 3 days old. I am now in my late 20's and healthy. My brother (born after me) had congenital heart defects as well, but after 2 surgeries as an infant, is living a normal life. He's in his early 20's. It is possible. Good luck and congratulations!

A.,

My heart goes out to you! My first child had a heart condition & also Down Syndrome. I know your situation is different, but I wanted to let you know that I can relate to you & will keep you and your family in my prayers.

I can tell you that I was a little apprehensive about having a second child, but a year later I gave birth to a healthy baby girl, followed by another little girl two years later. I assume that your son is healthy, and that should reassure you. I can't tell you what a wonderful experience it was when each daughter was born! It may sound trite, but having been in the valley, we were able to fully appreciated the joy on the mountain top and realized we had a precious gift!

I understand the pain of losing a child. My son lived to be an adult, but we lost him 5 years ago, and I can only imagine how difficult it must be to grieve for your loss while expecting your baby. Stay strong, take care of your self, & enjoy your son! You have one precious child, expect another!

I am very sorry for your loss, I can not imagine how hard it must have been to lose your baby. I will be praying for you and your husband for healing and comfort, and for a healthy pregnancy. I don't know anything about CHD, I just want to give you some encouragement and prayer.

Dear A.,

I am very sorry for your loss. We lost a baby too, to Trisomy 13, so a different medical condition, but the same emotions. We saw a genetics counselor before trying for another baby, and she told us "I almost never hear of parents going through this twice -- I can't say never, because we are where everyone who go through this comes, so we see everything, but it's incredibly rare." That was really comforting. Our daughter, born about a year after we lost our son in utero, is 6 and a half now and incredibly healthy. I wish you all the best, particularly with healing from your loss -- it's a very hard one.

love and blessings,
M.

A work associate had a child with a CHD and 3 years later had a healthy pregnancy with her second.

Hi A.,
I just wanted to say that my thoughts and prayers are with your family and your new baby.
Hoping for a wonderful, healthy pregnancy, birth, and baby to add to your family.

A. - mom to Dominic (10) and Julian (8)

When you get far enough along, they will look through the sonogram at the baby's heart and do a full exam on him/her at that time. I am so sorry for your loss.

A.,
My best friend from college has a son with a heart defect that was operated on when he was about 7 months old. I'm sorry I don't remember his official diagnosis, it has a long name. Her second child, a daughter, is a big, healthy girl who just turned three and looks exactly like her mommy. They did careful ultrasounds during that pregnancy and she maxxed up her folic acid intake and ate lots of protein while pregnant. Hard to know if those things help, sometimes even the "experts" can't tell us why things go wrong with fetal development.
Stress and worry are not good for pregnant mommies, so try meditation or maybe fear-release hypnosis. I have a child with special needs and my next pregnancy did include a little extra stress and worry about the possibility of having another child with the same difficulties (or worse, as in my son's case, his physical defects at birth were not life threatening as with some babies born with Opitz syndrome) but had to lay them aside and just concentrate on the positive things I could do for myself and to get ready for the baby. In the back of your mind you know that if you have another sick baby, you will be ready for the challenge. Tell yourself that from time to time and then move on.
We did see a geneticist but that may stress you out even more! My chances of another baby with Opitz was actually very high, and I've seen websites of families with multiple children with the syndrome, yet I have two kids unaffected and the middle one with that diagnosis. Wish I had studied genetics instead of Art and Journalism! :)
My short answer would be you are allowed to be nervous, but don't let it overtake the joy of your pregnancy and current life as a mom, wife, etc.

P. (mom to three busy boys)