Prayers Please (OT) UPDATED

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Joined: 11/14/08
Posts: 105
Prayers Please (OT) UPDATED

My sister is pg and had her "big" ultrasound on Thursday. She was told that the baby has ebstein's anamoly, which is a rare heart defect. She will be meeting with a specialist and will find out how severe it is. Please say a prayer for them! This is devestating news for all of us and we are not sure what is yet to come. If anyone has any personal experience with this condition please share any info you have if you don't mind.

UPDATE: My sister met with a high risk OB dr. and a pediatric cardiologist today. She found out that the baby actually has 3 problems with the heart, one of which is major. There is a 50% chance of the baby surviving to delivery. None of us are giving up yet so please keep praying!

Joined: 02/03/06
Posts: 36

My prayers are with your whole family. Keep us posted.

Joined: 12/05/07
Posts: 10

Luke was born with a congenital hear defect. We found out at 15 wks PG. I would say what helped us and what to expect in the remainder of her pregnancy is to prepare yourself with all the info you can get. We knew that he would need open heart surgery sometime between birth to 6 months of age. Before his birth we regularly met with the pediatric cardiologist and the Perinatal dr. We also picked our heart surgeon and met with him to get his thoughts on the severity of baby's case and for what's to come. We also got a tour of the cardiac PICU and the hospital where baby would have his surgery if it had to happen at birth (we were prepared for our stay). Anyway, Luke had Tetralogy of fallot which makes up 4 heart issues needing repair. I was in shambles the rest of the pregnancy but felt a bit in control being able to prepare for it all. Most parents don't even know their baby has a heart defect until they get baby home and baby turns blue. We were very lucky that they caught this now.....I know it's awful and hard to come to grips with. On the day of Luke's surgery I felt a huge relief that my worry would be over once his heart was repaired. We also took an infant CPR class (which our cardiologist suggested). Luke tolerated his condition well and we were able to wait till he was 4months old to have his open heart surgery. Needless to say, all the Dr.s were right about how babies even that young bounce back. I have a picture of Luke still in the PICU smiling for me. He has amazed me this past 10 months of recovery and is a normal baby boy! He is thriving and happy. I will pray for your sister and her baby and comfort for all your family during this time. It's so hard, thinking of your little baby having such a huge medical problem, but we have some of the best surgeons and technology. Luke's heart was the size of a walnut and they repaired a hole, removed a muscle bundle, widened a valve and corrected the size of his right ventricle. AMAZING! I hope our story gives you and her some comfort. Please feel free to let her have my email or ask for my phone number. It helps to talk to someone who has been there. I did the same to some person who had a heart baby prior to surgery. Sorry so long and please keep us posted!

Peggy & LUke

Joined: 12/05/07
Posts: 10

Hey Tammy....I know that my input was my opinion from our son's situation. I hope it doesn't hurt and maybe gives a bit of comfort. I know each case is different and comes with their own set of problems. Will be thinking and praying for the baby.

elleon17's picture
Joined: 01/26/09
Posts: 1981

Absolutely I will keep her and your family in my P & Ts.

All the best :bigarmhug:

Joined: 05/23/07
Posts: 88

So sorry she received such scary news. They'll be in my T&P.

Joined: 11/14/08
Posts: 105

Thanks to everyone for the support!

Peggy, thanks for sharing your story and giving us encouragement. I will keep it in mind that you are there for her to talk to if need be. I appreciate that! I know that this situation has weighed heavily on her mind over the last few days. Right now she is at the point where she is most interested in hearing what the doctors have to say this week. I think as things start to set in more and the time comes closer for her to deliver that she will be seeking more support. Thanks again! Smile

Joined: 12/05/07
Posts: 10

"tntd" wrote:

Thanks to everyone for the support!

Peggy, thanks for sharing your story and giving us encouragement. I will keep it in mind that you are there for her to talk to if need be. I appreciate that! I know that this situation has weighed heavily on her mind over the last few days. Right now she is at the point where she is most interested in hearing what the doctors have to say this week. I think as things start to set in more and the time comes closer for her to deliver that she will be seeking more support. Thanks again! Smile

I know she will be occupied with apts and tests up until delivery....when is her due date? Is this her 1st baby?

Joined: 03/16/15
Posts: 53852

Sending prayers and hugs.

Joined: 11/14/08
Posts: 105

"baylin" wrote:

I know she will be occupied with apts and tests up until delivery....when is her due date? Is this her 1st baby?

She is due May 28. This is her third child. She has an 11 year old and a 1 1/2 year old. She had lost a baby due to m/c a couple years before she got pg with the 1 1/2 year old.

Joined: 11/14/08
Posts: 105

See update in original post.

elleon17's picture
Joined: 01/26/09
Posts: 1981

:bigarmhug:

Lots of positive thoughts I will be thinking for you guys!

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

:lurk:

I know this was over 2 months ago, but wanted to repond anyway. I obviously don't know what has transpired during that time, but wanted to let you know I will be praying for her and the whole family. Having a child with CHD's is scary, but the technology today is amazing. Please let her know if she needs anyone to talk to I am always available. Just PM me anytime and I'll give you my contact info.

Joined: 11/14/08
Posts: 105

Aww, thanks for the support and prayers Angela! My sister is now 29 1/2 weeks pregnant and the baby is a BOY! The last time she had an ultrasound with the pediatric cardiologist the baby's heart had gotten bigger, which means the blood flowing into the heart is increasing. If there comes a time when the blood flowing into the heart is more then the blood flowing out of the heart then the heart will stop. She just had an in office ultrasound and a non stress test and those both went well and the baby is a mover! She has another ultrasound with the pediatric cardiologist next week and at that time I would think they would decide if she can go to the big hospital with all the specialists. They have talked about delivering at 37 weeks if she makes it that far. They don't want to deliver before that because the baby will need surgery immediately and they want the lungs to be developed. We continue to pray and hope for the best!

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Thank you so much for the update. I'm glad things are going good so far. I really have a huge burden in my heart for moms of special kiddos. Everyone will continue to be in my prayers. :bigarmhug:

Joined: 12/05/07
Posts: 10

Good to see your update on your little nephew! I'm glad things are going well and she is doing well. KUP and many prayers.

AlyssaEimers's picture
Joined: 08/22/06
Posts: 6560

Hugs!

elleon17's picture
Joined: 01/26/09
Posts: 1981

I'm so sorry Tammy. She is in my T & P and only good thoughts.

Joined: 11/14/08
Posts: 105

I have an update. My sister had an u/s and it showed that there is some fluid around the heart which is an indicator that the heart is struggling to function. The baby's heart is taking up about 50% more space in the chest then a normal heart. The concern with this is if there is enough space for the lungs to develop. The goal is for the baby to make it to as close to term as possible and survive for two days. After a few days they would do the first surgery to put a stint in to open the valve that is closed off and to remove part of the heart to make it a normal size. The baby would be hospitalized for at least a month. They would do another surgery a few months later. She will now have ultrasounds every couple weeks and will be seeing the specialists at a bigger children's hospital in a month. Please keep praying! I haven't mentioned this on FB yet because not everyone I know IRL is aware of the situation right now.

beckiwill's picture
Joined: 01/13/09
Posts: 78

Thinking of your sister and her LO and praying for them both!!

wendy675's picture
Joined: 01/08/08
Posts: 19

Will continue to pray for her and the baby!

Joined: 11/14/08
Posts: 105

Just thought I would update. My sister is having the baby the first week of May. He will be having a procedure and a major surgery within the first week. I will update again once he is here. Please keep praying!

elleon17's picture
Joined: 01/26/09
Posts: 1981

"tntd" wrote:

Just thought I would update. My sister is having the baby the first week of May. He will be having a procedure and a major surgery within the first week. I will update again once he is here. Please keep praying!

Still praying. It will be easter and I think that will maybe send some extra help from above. :bigarmhug: