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Unborn baby diagnosed

Posted by on Feb. 13, 2009 at 9:51 AM
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I don't know where to start!  I am so overwhelmed and scared!

I am almost 21 weeks pregnant and was advised to get an amnio due to my sequential screening showing a high risk for down syndrome.  During the ultrasound for the amnio the doctor and tech thought there might be something wrong with the baby's heart.  A rapid FISH on the amnio was negative for down syndrome.  We were sent to a specialist yesterday to check the baby's heart and he did confim that she has a rare heart defect.  At this point he has diagnosed her with a double outlet right ventricle, malposed great vessels and a possible mitral valve atresia.  He said she has a 50/50 chance with surgeries.

Support, words of wisdom, information, prayers ...anything would be greatly appreciated!

God bless!

~Tinapraying

by on Feb. 13, 2009 at 9:51 AM
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Replies (1-10):
Kelseybelsey412
by New Member on Feb. 15, 2009 at 6:42 AM

hi! My name is Kelsey and I, too, am pregnant with a baby with a CHD. Im having a little girl due March 30th (but she dropped and I am already starting to dialtate) Her name is Devynn and she has Transposition of the great arteries or DORV....we are not sure if both her arteries are on her right side or not, but she also has a VSD. I will be honest, I am terrified but just reading the posts in this group have helped so much. I have had a long lonely pregnancy and Devynns sperm donor wants nothing to do with us. I finally found someone who really cares about me AND Devynn and he is being great about her whole heart condition. She will need surgery within the first 3-5 days after she is born...I am scared and want to get the whole ordeal over with.

Keep your head up Darling! and keep us posted, I know how scary and shocking it is, as do all these women in this group.....let me know if you need anything or if you just need to talk I am am here for you!!

she calls me mommy Pictures, Images and Photos


its a girl Pictures, Images and Photos

dwntwn2princess
by New Member on Feb. 16, 2009 at 8:42 PM

You are very lucky to be diagnosed early be very glad of that. My son was born this past july and i had NO prewarnings, when he was born he received a 9,9 on is apgar score and was deemed to be very healthy and we were sent home thinking he was like any other baby 3 days after coming home from the hospital he stopped eating n anytime he actually did eat he threw up everything an more so i took him to the dr and they couldnt figure it out either so they sent me to childrens hosp and they too were puzzled for a few hrs until he finally went into shock and everything he went threw in the Er (spinal tap, cath, countless pokes for iv atempts and there were tons) were absolutely heart wrenching to watch but he was such a trooper and just held my hand the whole time till they moved me so they could tube him, and i have always wished so badly that i would have been prenatally diagnosed so that he never would have had to go threw all that. Eli was diagnosed with a VSD,ASD,Bicuspid aorta, and a severe coarchtation of the aorta. I hope that u both live near a good hospital it is AMAZING what they can do for kids anymore especially brand new babies. There are some really great dr's out there to do it too. i am so thankful that i live near a very good childrens hospital which has amazing dr's. The best advice i can give u is even though its probably one of the hardest things u will ever have to watch u just gotta stay strong and in a way they (ur baby) almost helps u when u start to reach ur limit, most of all they just really need u there by their side as much as u can be, ur reassurance and comfort makes more of a difference to them then u can ever imagine. Ino with my son the nurses even said they could see a rise in his spirit and health when he just knew i was in the room with him. Hold their hand, rub there head, tell them it will be ok, sometimes Eli just needs to hear me say its ok. Ud be amazed at how strong these babies really are and the best time to get sumthin like that fixed is in the begining cuz they heal so much better and have the best chance at "normal" life. Keep your head up, and if u even need anythin ill try my best to help! Good luck!

Borikaos
by New Member on Feb. 17, 2009 at 3:02 AM

Hi there. I know that you are going through a tough time right now, like the mom above said you are lucky the doctors caught this now, it could be alot worse if you had never knew/ My son was diagnosed with Aortic stenosis and mitrovalve stenosis while I was about 6 months pregnant. Even though I knew prior to the birth nothing could prepare me for what happened after. I worried and cried alot since i found out that my son had a CHD. When he was born he was in the hospital for 3 weeks then released and 1 1/2 wks later he was readmitted because he couldn't hold anything down or breathe on his own. The doctors that diagnosed him found that his aortic stenosis was worse than they thought and surgery was the only option. I was told he had a 10% chance of living to the age of six months without it. He went through the surgeries and of course it was the hardest thing that i have had to do(watching my baby go through this) but in the end it was worth it. Like the mom above said it is AMAZING what doctors can do to save our little ones and that your baby can sense your presence in the room. I know for me it was hard to see him in pain and being poked and disturbed all the time, but i was there for him, to let him know i loved him and that i would never leave him. I The nurses in the PICU and NICO told me and my husband that they have seen alot of babies with these conditions and the ones who seemed to do better were the ones who's parents were with them often. I truely beileve that this is why my son recovered so quickly from his surgeries.!  I thank God all the time for my miracle child.  I know this is hard for you but you have to be strong and know that you are not alone and that you have your families support, your churches support and of course us as your support. I will pray for your child, and you. if you ever feel like talking we are here! I wish you and your family the best

tinkerbell76
by Member on Feb. 17, 2009 at 9:07 AM

Thank you so much for taking the time to share your stories and giving me words of encouragement.  I truly can't tell you enough how much it is appreciated. 

I live about an 1 1/2 hours away from the University of Iowa Hospital where all the medical care will be provided for baby Cassiana. We want to be by her side as much as possible and are going to have to go back and forth daily in order to attend to other 5 children.  One of my fears is that she will pass when I am not there to be with her. 

Thanks again,

~Tina

Kelseybelsey412
by New Member on Feb. 18, 2009 at 8:11 AM

I live 45 minutes away from the hospital where my daughter Devynn will be having her surgery...I too am scared she may pass when I am not there! I know we are strong and we can oull through....keep us updated and let us know how things go!

Quoting tinkerbell76:

Thank you so much for taking the time to share your stories and giving me words of encouragement.  I truly can't tell you enough how much it is appreciated. 

I live about an 1 1/2 hours away from the University of Iowa Hospital where all the medical care will be provided for baby Cassiana. We want to be by her side as much as possible and are going to have to go back and forth daily in order to attend to other 5 children.  One of my fears is that she will pass when I am not there to be with her. 

Thanks again,

~Tina


she calls me mommy Pictures, Images and Photos


its a girl Pictures, Images and Photos

rosebud724
by on Feb. 23, 2009 at 8:05 PM

I am a little late replying.

I have 2 chd kids. I was told my son shouldn't have made it pass 9 months. he is now 3 1/2yrs. finally eating on his own. Done with all his surgeries and is doing great!

My daughter is having some rough spells right now. She is going in for her last surgery in April. The drs told me to abort her. I knew about both of them at 5 months. I think it is better that they know about the defect so they can watch and know exactly what the baby needs. It is scary but your baby girl will be so strong.

prepare yourself for the worst and hope for the best. Sounds stupid but it helped me a lot when I almost lost my son 4 times.

I will be thinking about you. You and your little girl will be in my prayers.

 

EddiesMommy712
by New Member on Feb. 24, 2009 at 4:12 PM

Hello, my son was also diagnosed with a CHD around 25 weeks.  I didn't know I was pregnant until I was about 20 weeks along...so we are guessing at how far along I was.  He got diagnosed with Double Outlet Right Ventricle and Pulmonary Atresia. I was also told my son would not live past a couple of hours and that I should just abort him.  I was adamant on giving birth and even if he only lived a couple of hours, I was going to love him completely and whole heartedly for those couple of hours.  During my pregnancy the doctors were also afraid that he would not gain weight, as he wasn't growing as quickly as he should have.  Then around 30 weeks, he started gaining like crazy and growing! He was born 4 weeks early and he came out at 9lbs 9oz.  He had his first surgery when he was  a week old and had a second surgery when he was 5 months old.  He has one more surgery coming up, but not scheduled yet.  He will be a year old on March 9th and to all the dr's and nurses that told me he wouldn't make it, I take him to their office and literally say "Here is the little boy you wanted me to abort and he is STRIVING!"  Positive thoughts, hugs, and prayers are what I am sending your way mama.  You let me know if you need anything at all or if you just want to talk sometimes.  I know how overwhelming it is sometimes.  Feel free to PM me anytime for anything.

Linda


heathoconnell
by New Member on Feb. 24, 2009 at 9:04 PM
I am not sure where you live, but my daughter was diagnosed in utero and we immediately started our life at the Children's Hospital of Philadelphia. I delivered at U of Penn (although now CHoP has a delivery unit on the CICU floor.

The advice I can offer you, is tour the CICU, speak with the neonatologist, and anyone else you can to prepare yourself before the birth of your child. Make sure you are at the BEST hospital you can possibly get to to deliver.

An amnio to me is useless. I had one with my daughter once her heart condition was discovered. At birth she was also tested for a few hundred genetic defects, but the one that no one would have even thought to test for at the time because that was not the heart condition that she had is one that she has - Williams Syndrome. She was clinically diagnosed at 11mths.

Our cardiologist told us not to research on line about her heart condition before she was born. We listened and were glad. A few years ago I decided to do that research and I would have not handled the birth as well and been more of a nervous wreck because I would have known too much. Rely on your fetal cardiologist for information so you don't overwhelm yourself. Use the social worker at the hospital who will come to you right away at your baby's side.

I will keep you in our thoughts. They thought my daughter could have been in the hospital for a long time and instead she came home in a week with no surgery. Her heart went from moderate to severe to now being mild. There is hope.
Heather
Mom2kyky
by Member on Feb. 24, 2009 at 10:38 PM

I have to agree with this!!! Start researching hospitals NOW!!! Find the best hospital you can possibly get to. We are at Childrens of Atlanta and have had a wonderful experience. My daughter had open heart surgery yesterday to repair a Complete AV Canal Defect and a oversized PDA. She is doing great and they take wonderful care of all the children here. We chose this hospital after much research for her surgery becuase it is ranked number 3 in the country for heart repairs and it was only about an hour from us. I delivered at MCG (medical college of georgia) and had an ok experience there, but did not care for their heart surgeon there so I knew that had she needed surgery right away we were prepared to have her life-flighted to CHOA.

Good luck with everything.

When you choose your hospital, ask to arrange a meeting with the CICU, the surgeon, social workers, family life specialists, cardiologists, neonatoligists, the chaplin... anyone else you can think of... ask to meet them all before you deliver so that you can be as prepared as possible.

Quoting heathoconnell:

I am not sure where you live, but my daughter was diagnosed in utero and we immediately started our life at the Children's Hospital of Philadelphia. I delivered at U of Penn (although now CHoP has a delivery unit on the CICU floor.

The advice I can offer you, is tour the CICU, speak with the neonatologist, and anyone else you can to prepare yourself before the birth of your child. Make sure you are at the BEST hospital you can possibly get to to deliver.

An amnio to me is useless. I had one with my daughter once her heart condition was discovered. At birth she was also tested for a few hundred genetic defects, but the one that no one would have even thought to test for at the time because that was not the heart condition that she had is one that she has - Williams Syndrome. She was clinically diagnosed at 11mths.

Our cardiologist told us not to research on line about her heart condition before she was born. We listened and were glad. A few years ago I decided to do that research and I would have not handled the birth as well and been more of a nervous wreck because I would have known too much. Rely on your fetal cardiologist for information so you don't overwhelm yourself. Use the social worker at the hospital who will come to you right away at your baby's side.

I will keep you in our thoughts. They thought my daughter could have been in the hospital for a long time and instead she came home in a week with no surgery. Her heart went from moderate to severe to now being mild. There is hope.


Katie - mommy to Kylee (princess, and big sister) since 10-30-05 and Auriana (our miracle baby girl with DS, CHD, and HOH) since 09-17-08 (www.carepages.com/Aurianasheart)

Check out my travel site www.RockinTravelBookings.com for all your travel booking needs!!

God Bless You All!!

tinkerbell76
by Member on Feb. 26, 2009 at 4:40 PM

Thanks again for all the prayers and advice!

You all have given me so much to think about. Many more things than my stressed out mind could have thought of.  I truly appreciate all of it.

We were referred to the University of Iowa Hospital for delivery and care of baby Cassiana.  It is about 1.5 hours away from our home. 

What questions should I ask the high-risk OB, pediatric cardiologist, perinatlogist, etc?

~Tina

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