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Posted: 9/11/2009 5:23:24 PM EST
Got back from my daughter's first ultrasound. (Due in January)

Found out I'm having a baby girl, she is my first. I'm so excited.

Found out she has one of the more complex and severe congenial heart defects, called Hypoplastic Right Heart Syndrome. She will need emergency surgery immediately after birth. Only cure will be a heart transplant, and that's after a series of three stunt operations. One within a few days of birth, one at three months, and one between three and five years. I'll put it out there that I am on an emotional roller coaster. I feel like its my fault and there must have been a reason why.

Its alot to deal with and I am overwhelemed. Anybody have any experiences like this? If its too personal to share, feel free to PM. How do you find the peace to sleep at night? I'm lucky if I get 3-4 hours of sleep right now, and I know logically that there isn't anything I am helping by worrying cause there is nothing that can be done to fix it right now.

Mom just had a amniotic fluid draw today. We get to wait on results from that. The baby is very active and it is only 21 weeks along.

Damn.
Link Posted: 9/11/2009 5:24:30 PM EST
[Last Edit: 9/11/2009 5:24:55 PM EST by Renegade13B]
sorry
Link Posted: 9/11/2009 5:28:32 PM EST
Keep your chin up and think positive thoughts...You will need to be strong for your wife and your daughter.
Link Posted: 9/11/2009 5:31:07 PM EST
[Last Edit: 9/11/2009 5:32:02 PM EST by Scold]
I know this is going to sound preposterous to many people here.... but has she considered an abortion? I do not know where you and your families opinions fall concerning this, but i just don't think I could put myself and my child through those operations (both financially and emotionally).

Edit: Whatever you guys plan to do.. I will send some good thoughts your way and I hope everything turns out for the best. You have a community of people here if you need anything.
Link Posted: 9/11/2009 5:34:45 PM EST
Do you pray?

When I was going through the testing after becoming pregnant immediately following radioactive iodine treatment thyroid cancer, I prayed a lot. I prayed for peace and the strength to accept and deal with whatever happened (mega big chance of serious birth defects––physical and mental). And then I put the worry in a box and said, "here, God. This is for you. I can't use it and it's only causing problems."

Medical science is a wonderful thing and it's likely that your beautiful little girl will weather this storm....better than you, too, I might add . I would, however, get a second opinion. Errors have been made on u/s before.
Link Posted: 9/11/2009 5:35:18 PM EST
Originally Posted By Scold:
I know this is going to sound preposterous to many people here.... but has she considered an abortion? I do not know where you and your families opinions fall concerning this, but i just don't think I could put myself and my child through those operations (both financially and emotionally).

Edit: Whatever you guys plan to do.. I will send some good thoughts your way and I hope everything turns out for the best. You have a community of people here if you need anything.


that was quick...


To the OP.

Prayers to you. Possible that the ultrasound might be wrong?
Link Posted: 9/11/2009 5:36:40 PM EST
Get a second opinion.
Link Posted: 9/11/2009 5:37:02 PM EST
Originally Posted By Scold:
I know this is going to sound preposterous to many people here.... but has she considered an abortion? I do not know where you and your families opinions fall concerning this, but i just don't think I could put myself and my child through those operations (both financially and emotionally).

Edit: Whatever you guys plan to do.. I will send some good thoughts your way and I hope everything turns out for the best. You have a community of people here if you need anything.


Have you considered a post birth abortion for yourself?

OP, I'll be praying for you and your wife and your unborn girl. Whatever the outcome, you need to be as one on this. Singly you might not be strong enough, together, your strength becomes hers and hers yours. Talk to your parents, pastor [if you go to Church] and maybe some people that have gone thru this.



Link Posted: 9/11/2009 5:37:03 PM EST

While a hypoplastic heart is a bad thing for a baby to have don't lose all hope.

It's possible that the US didn't fully show all the structures....the damage may not be
as bad as you think. It might even be that the heart will end up normal or close to normal
at birth. Few medical tests.....especially prenatal tests can be guaranteed 100% accurate.

So there is a chance, a small one admittedly but still a chance that things won't be as bad as
you think.

Link Posted: 9/11/2009 5:37:04 PM EST

Originally Posted By klinc:
Originally Posted By Scold:
I know this is going to sound preposterous to many people here.... but has she considered an abortion? I do not know where you and your families opinions fall concerning this, but i just don't think I could put myself and my child through those operations (both financially and emotionally).

Edit: Whatever you guys plan to do.. I will send some good thoughts your way and I hope everything turns out for the best. You have a community of people here if you need anything.


that was quick...


To the OP.

Prayers to you. Possible that the ultrasound might be wrong?

Scold...I'm just going to ignore the first part. Thank you for the thoughts. I will do whatever it takes if it kills me to take care of the finances.

Klinc: Its the second one in three days. I pray that two doctors are wrong.
Link Posted: 9/11/2009 5:37:43 PM EST
Get a second opinion

Prayers inbound
Link Posted: 9/11/2009 5:38:34 PM EST
Sorry buddy.
Link Posted: 9/11/2009 5:41:33 PM EST
Originally Posted By gman552:
Get a second opinion.


This, then accept that what God (or life) has given you.
Link Posted: 9/11/2009 5:42:28 PM EST

Originally Posted By Delta:
Keep your chin up and think positive thoughts...You will need to be strong for your wife and your daughter.

I tend to box up emotions like this in front of her....she asked me if I really cared today, because of my demeanor (I come off cold when exceptionally stressed.) about it...I assured her I did, but needed time to take everything in.
Link Posted: 9/11/2009 5:43:42 PM EST
ill pray for her and the family :(
Link Posted: 9/11/2009 5:44:19 PM EST
Guys... I was just posting a possible option as everyone in this country isn't pro life. I mean no disrespect towards his family and keep your personal attacks towards me out of this thread. Send them to me in PM if you must but don't clutter this thread up with that stuff.

I just showed some of my non shooting friends this thread and they send their thoughts and prayers as well.
Link Posted: 9/11/2009 5:45:38 PM EST
Oh my God, that's hard news to deal with

However, the love you feel for your child will be like nothing else once she is here. Just know that she will need that love and comfort and put that ahead of all else. Best wishes to you and your family.
Link Posted: 9/11/2009 5:46:00 PM EST

Not appropriate to get into details, but I know that the fortitude and strength of the family is the answer.

I wish you the best of luck for you, your wife and your baby.
Link Posted: 9/11/2009 5:46:46 PM EST
Do not blame yourself, and do not do her the disservice of thinking less of her or yourself for a condition. Everyone in life has problems... as many problems as he has, any of us would be proud if our children achieved what Stephen Hawking has achieved. You will do everything you can, and you will love her, that is all that is necessary. My prayers are with you and your family.
Link Posted: 9/11/2009 5:46:46 PM EST

Originally Posted By Scold:
Guys... I was just posting a possible option as everyone in this country isn't pro life. I mean no disrespect towards his family and keep your personal attacks towards me out of this thread. Send them to me in PM if you must but don't clutter this thread up with that stuff.

I just showed some of my non shooting friends this thread and they send their thoughts and prayers as well.

I understand that, but that is poor timing. Trust me, my knee jerk reaction was a COC violation.

I appreciate the listing of options. There is just a bunch of history there that you couldn't possibly know about.

Thank you for the posts though.
Link Posted: 9/11/2009 5:47:41 PM EST
Every child is a blessing, no matter the difficulties or issues

To the OP, one of my kids has a genetic disorder. The amount of joy he provides to us is irreplaceable. I honestly believe the Lord gives us these challenges because he knows we can handle them, and they give us a chance to be better people.

Hang in there, love her, she needs you!
Link Posted: 9/11/2009 5:49:32 PM EST
[Last Edit: 9/11/2009 5:51:02 PM EST by Tony7189]
My prayers go out to you and your family, may God give you strength in this difficult time and may he bless your unborn child.
Link Posted: 9/11/2009 5:49:40 PM EST
I am not sure if that is what my niece had or not. She basically had holes in her heart that allowed the clean and dirty blood to mix in one of the chambers.

If that is part of what you are refering to, I will share the outcome of my niece...............In a nutshell, she had surgery within a couple days of being born to correct the problem. It ended up being more 'holes' than they first expected. She had the surgery, was on some heart meds for the first year ( maybe 2) and then the doctors wained her off of those and she has been fine since. Just as active as the rest of the kids.

As I said, I am not sure by the name if your looming problem is the same as what it was with my niece, but that was her outcome thus far. Those pediatric heart doctors have some killer skills. This was in Spokane, WA. We have what are considered regional hospitals here and they have a wing at one hospital that is dedicated to heart issues.

Do your research on the subject and hold your deep worries for when you know they are justified. That will help you keep your focus and sanity.


On a side note: My dad had a pet scan today to check up on his recovery from throat cancer and the extremely invasive surgery that he went through to get rid of it and .......................ALL WAS CLEAR !!

You have my prayers and best wishes for best possible outcome. Hang in there and tell your wife to also.

Good luck.
Link Posted: 9/11/2009 5:51:23 PM EST
Prayers sent.
Link Posted: 9/11/2009 5:54:36 PM EST
Originally Posted By LetFreedomBeep:
Every child is a blessing, no matter the difficulties or issues

To the OP, one of my kids has a genetic disorder. The amount of joy he provides to us is irreplaceable. I honestly believe the Lord gives us these challenges because he knows we can handle them, and they give us a chance to be better people.

Hang in there, love her, she needs you!




"I know God only gives me as much as he feels I can handle, but I wish he wouldn't trust me quite as much"
-something I saw framed at someones house once.

Link Posted: 9/11/2009 5:54:51 PM EST
Originally Posted By JSteensen:

Originally Posted By Delta:
Keep your chin up and think positive thoughts...You will need to be strong for your wife and your daughter.

I tend to box up emotions like this in front of her....she asked me if I really cared today, because of my demeanor (I come off cold when exceptionally stressed.) about it...I assured her I did, but needed time to take everything in.


You are in my prayer...I am a young father as well, if you want IM me a phone # and i'll call and pray with yall...counsel I would give to all (my wife is a nurse) take amniotic test very lightly...we don't have them done due to our beliefs about abortion...it would not affect to out come of pregnancy for us...birth. This is a mixture of our faith, the fact that those test are 33-60% wrong, and that I was born with a disability...
Link Posted: 9/11/2009 5:55:38 PM EST
Originally Posted By thexrayboy:

While a hypoplastic heart is a bad thing for a baby to have don't lose all hope.

It's possible that the US didn't fully show all the structures....the damage may not be
as bad as you think. It might even be that the heart will end up normal or close to normal
at birth. Few medical tests.....especially prenatal tests can be guaranteed 100% accurate.

So there is a chance, a small one admittedly but still a chance that things won't be as bad as
you think.



Prayers sent for a healthy baby girl. Dont lose hope that your daughter will be healthy. US are not 100% reliable. A good friend of mine didnt know he was going to have twins until the birth. The US didnt ever show the other one.
Link Posted: 9/11/2009 5:56:15 PM EST
I can't pretend to know what you are going through, but keep your head up, you have to believe the three of you can make it through this.

My sisters second child had something very similiar, she's 13 now and doing just perfect.

I'll send prayers for your baby and the two of you.

Jeff
Link Posted: 9/11/2009 5:56:29 PM EST
Prayers sent.
Link Posted: 9/11/2009 5:58:42 PM EST
My mom is currently foster parenting a kid with the same condition. The kid has been through several heart surgeries and his color has improved dramatically. There's also a kid in my fire station's response area that's almost ten with the same condition and I would have never guessed it watching him run around like a kid.
Link Posted: 9/11/2009 5:59:40 PM EST
Originally Posted By JSteensen:

Originally Posted By Scold:
Guys... I was just posting a possible option as everyone in this country isn't pro life. I mean no disrespect towards his family and keep your personal attacks towards me out of this thread. Send them to me in PM if you must but don't clutter this thread up with that stuff.

I just showed some of my non shooting friends this thread and they send their thoughts and prayers as well.

I understand that, but that is poor timing. Trust me, my knee jerk reaction was a COC violation.



I have a feeling that anything you would have seen would have been excused considering the circumstances. My wife is pregnant with our first child and if someone had suggested that we kill him, a COC violation would have been the least of my worries.

Get a second opinion from a specialist. At 5 months a doctor told us that our son might have a serious brain problem. As it turns out, there is no problem, he is perfectly healthy and they are expecting him to be over 9lbs when he is born in about a month.

I will be praying for you, your wife and your child. Please feel free to IM if you want to talk since I know a little about what you're going through.
Link Posted: 9/11/2009 6:00:40 PM EST
Originally Posted By JSteensen:

Originally Posted By Scold:
Guys... I was just posting a possible option as everyone in this country isn't pro life. I mean no disrespect towards his family and keep your personal attacks towards me out of this thread. Send them to me in PM if you must but don't clutter this thread up with that stuff.

I just showed some of my non shooting friends this thread and they send their thoughts and prayers as well.

I understand that, but that is poor timing. Trust me, my knee jerk reaction was a COC violation.

I appreciate the listing of options. There is just a bunch of history there that you couldn't possibly know about.

Thank you for the posts though.


JSteensen,

If you want there is a prayer thread over in the religion forum.

You can post there if you like also, or I can do it for you if you like.

I don't come over to GD much, but tonight felt led to do so.

As you probably know, God works out all things and just not only the good, for the people who love Him.

And know that He is fully able and capable of doing just that, for your precious unborn daughter as well as seeing you and the rest of your family through this situation right now.

May God watch over you right now and reveal Himself to you, and give you peace.

Thanks,

SAE

Link Posted: 9/11/2009 6:01:29 PM EST

Originally Posted By xaaronx:
Prayers sent.

+1 I can't even imagine...
Link Posted: 9/11/2009 6:02:46 PM EST
Prayers inbound.
Link Posted: 9/11/2009 6:03:02 PM EST
Prayers outbound and best wishes inbound.
Sometimes God makes such a great kiddo that he wants them to come meet him after a very short stay on Earth. I hope your daughter is one of the great kids that gets to spend a long and happy life here. Either way you're in for some tough times over the next few months so I'll say a prayer for you and your wife too.
Link Posted: 9/11/2009 6:03:27 PM EST
1) Congratulations on your baby. She is yours and she is special

2) it's NOT. YOUR. FAULT. it's a birth defect. I have met people born without eyes, legs and arms. They are all AMAZING and do things you could never dream of them doing. it's how they are born and it's "normal" to them. They are not limited. I am 6'5" and was a professional athlete, I got my ass beat to death in a game of wheelchair basketball by some guys either born without, or missing legs. halfway through the game me and my team were like "F it, we're cheating. " we ditched the wheelchairs and played full legs.

we still lost

3) Heart surgery is *amazing* today. our neighbors kid was born with a terrible congenital heart defect that sounds like yours, several surgeries over several years. he also was born with most of his insides actually outside his body. they were pretty sure he wouldn't live.

today: totally normal although a little small, but tough as freaking nails. I watched him whip some kids ass in wrestling last year that was nearly twice his size. he wrestles up two weight classes and DOMINATES.

he's also good at baseball.


4) if the worst happens. the very worst, and she passes away. you will have given a very special spirit a body for a short time and enabled her to be resurrected at some time and live with you again. You will have known and shared some time with a special person for a short period and she will always be your daughter. Forever.


pray, take time with your wife, and deal with challenges as they come. My brother and sister in law had a baby that was born without a brain stem. She lived a very very short time. It was sad but they know her and feel blessed to have met her for a short time.

prayers are with you and your family man.

Link Posted: 9/11/2009 6:05:06 PM EST
Prayers sent
Link Posted: 9/11/2009 6:05:56 PM EST
JSteensen,

One day at a time brother.

I'm going to keep you in my prayers because I know first hand that God answers prayers.

Let me tell you two stories. First, though, please don't let these stories give you false hope. It may be exactly as the Dr's say and it may be a very long road.

My son was diagnosed via ultrasound with a malformed kidney. We went to a specialist and they confirmed via high-res ultrasound that he had lost one kidney, that it had developed as cysts and not a kidney, but that the other was fine and we would watch it to make sure it didn't develop any problems. Nothing we could do but wait and go back to the specialist after he was born. Several weeks after his 6wk early pre-term birth we go back to the specialist to see what we might need to do. His "malformed" kidney is fine. 100% healthy. Only the very slightest sign that there was a problem and the Dr said that if he hadn't known the kidney had a problem earlier, he would not have detected the sign.

My Niece was diagnosed with down syndrome via ultrasound. They look for "markers" and she had 8 and they included the high probability ones. It was virtually 100% diagnosis. They wanted to do an amnio but as we all are pro-life, my sister just said no, because it didn't matter. (She lives in Maryland and most of the staff were shocked and outraged. btw) My father was battling cancer at the time. He prayed that God put Molly's burden on him and spare Molly. Molly was born completely normal healthy little girl. My father lost his fight with the cancer. The list of miracles that have happened to my family since my father passed is long. I think he is probably getting on Jesus' nerves with all the requests. Nevertheless... I'm going to ask (pray) my father to pray for your little girl.

She's in God's hands. He just lets us take care of them for a little while.

-3D
Link Posted: 9/11/2009 6:08:32 PM EST
Hang in there! That is terrible news for you to get.

I have a baby due December, and I know how worried I am that everything will be ok.

There is nothing you can due but be strong for your wife, and think positive thoughts. Many children make it through unbelievable odds, and that is what you need to know is going to happen.

I hope the best for you and your family.
Link Posted: 9/11/2009 6:11:54 PM EST
My head would be spinning.
Loss for words ...... other than Good luck.
Link Posted: 9/11/2009 6:12:07 PM EST
There is no way it's your fault. You may think it is, but it isn't. Every day we roll the dice. You need to stay strong for your wife and daughter and do your very best in this trying time. Stay away from the internet and WebMD's... I don't think you have much control at all in what you describe at this point. It's a little tiny baby and some things are likely magnified in those ultrasounds. You are probably hearing the worst-case scenario. Once they get in there after her birth they could very likely see it's not as bad as they expected. Prayers to you and your family. It sounds as if you and your doctor are way ahead of any potential problems so count your blessings right there.... stay strong! I'm sure everything will work out!
Link Posted: 9/11/2009 6:14:15 PM EST
My prayers go out for you and your family. I hope your daughter's operations are a complete success, may God bless you and your wife with the strength necessary to do what you have to.
Link Posted: 9/11/2009 6:16:49 PM EST
My youngest daughter was born with Pulmonary Atresia, something somewhat similar to what your little girl has. I'm going to give you some advice, if you will take it. First, focus on your little girl. You are her advocate, and you must do the right thing for her. You must defend her, and speak for her. If you think the doctor is full of shit, then find another one. You are her voice. Don't shrink from that responsibility. Second, your daughter will live. Modern cardiology is amazing, and they can do wonders. She will live, and you will be surprised at how well she does. Third, you are in for a long, hard struggle, but it is worth it. These things are not decided in days, or weeks, but years. Get mentally prepared for this, because it isn't going away soon. You will, however, never regret going through it for, and with, that precious baby. Lastly, never forget, the struggle is HERS, your heart is fine. Don't wallow too much in self pity. And it isn't your fault, it just happens. CHD's are statistically rare, but they do happen. Just stick by her, love her, and be her advocate. Be her father, and she will be fine. A child that knows that he or she is loved and protected will heal and recover faster, and better. Show her you love her, and she will come through for you and her mother.



One more thing–– 5 years is a long time in Cardiology. Things will probably be a lot more advanced, and a lot easier on her by the time she is that age.
Link Posted: 9/11/2009 6:17:01 PM EST
Originally Posted By xaaronx:
Prayers sent.



This is the kind of stuff you need to think about! Times will be tough no doubt, but it will get better. On the plus side your Daughter will not remember the pain from when she was a baby. Hopefully a few years down the road you will have a healthy Daughter that you will love for the rest of your life.
Link Posted: 9/11/2009 6:21:08 PM EST
Second opinion and don't think that it's an absolute at this point. Professionals are wrong all the time.
Link Posted: 9/11/2009 6:22:03 PM EST
I was born with an Atrial Septum Defect. (Hole between the chambers) I wasn't suppose to live past 2. Then I wasn't suppose to live past 5.
Then it was 10. Then it was 21.
Medical Science finally evolved and I had surgery when I was 22.
The last time I checked, I'm still here and despite being married one time to a redhead, I'm doing fine.
So don't give up hope.
What may seem like a medical mountain now, may become a speedbump tomorrow.
Link Posted: 9/11/2009 6:23:36 PM EST
From a dad of two little angels, sincerely hang in there and prayers sent.
Link Posted: 9/11/2009 6:25:01 PM EST
This thread is why I love this place. I have experienced nearly every emotion(even rage) just reading it.

To the OP, I can only imagine what you are feeling, but I know it will work out. Prayers have been sent from my end.

Link Posted: 9/11/2009 6:26:38 PM EST
Prayers sent. I don't know what else to say.
Link Posted: 9/11/2009 6:27:34 PM EST
Originally Posted By ARLady:
Do you pray?

When I was going through the testing after becoming pregnant immediately following radioactive iodine treatment thyroid cancer, I prayed a lot. I prayed for peace and the strength to accept and deal with whatever happened (mega big chance of serious birth defects––physical and mental). And then I put the worry in a box and said, "here, God. This is for you. I can't use it and it's only causing problems."

Medical science is a wonderful thing and it's likely that your beautiful little girl will weather this storm....better than you, too, I might add . I would, however, get a second opinion. Errors have been made on u/s before.


Good reply.

Prayers inbound. Your Daughter is already a precious person. Place her well being in God's hands, and he will see that everything happens the way it should.
Link Posted: 9/11/2009 6:32:51 PM EST
when your daughter is born. kiss that little tiny face.
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