Lot's of Questions

[Carinne]

I am new to all of this. I am 21 weeks and at our 20 week ultrasound at the University they let us know there was a problem with our babies heart. The preliminary diagnosis is Tetralogy of Fallot, and they think the baby may also have Pulmonary Atresia. Has anyone dealt with these problems? How long were you in the hospital after birth? Also, I have been planning on delivering at the U with my CNM, wanted to do it natural and labor in the tub. Is this still wise? My 1st was a C-section, and #2 was a VBAC. If a C is the best option this time around, I would rather deliver that way. Also, should I continue with my midwife? I know Dr. Byrne is consulting her, but should I switch to a regular OB now, rather than later? Lot's of questions, sorry. My echo is the 5th, and I'll be asking the cardiologist, but thought I would get evryone's opinions here also. Thanks!

[pattissimon]

My daughter has TOF, she was diagnosed five days after she was born. She was born via C-section at 36ish weeks but that was all due to the fact she was a twin. She didn't spend any time in the NICU (but that is only because we didn't know she had a CHD) She came home with us two days after the diagnosis and had open heart surgery at 4months. She was doing well and the cardiologist wanted to wait until she gained weight (she was 4lbs at birth). She didn't require O2 until just before surgery, that is how the Dr. decided it was time. She had her complete repair at 4months old, everything went really well. We spent 4 days in the PICU and 4 days on the floor. She is a happy/healthy 3yr old full of enerygy and attitude! She will need to have her Pulmonary Valve replaced, when they repaired the pulmonary stenosis her valve began to leak, she will need this done before she starts school and again through out her life. I also delivered at the U, with an OBGYN. I would see what Dr Byrne recommeds and go from there. The good thing with delivering there is even if you stick with your midwife there is always an MD in house ready to step in and help if needed.

[Heart Mommy]

I can't tell you what is best for your baby. But, We delivered with Dr. Bryne and it was vagi, the only thing that I would say is different is the amount of monitering they do. Right after the baby is born they want to take them to stablize if they are prediagnosed heart babies. Because My sons anomoly is different than your little one it all might be different. But I LOVED the U. So congrats on your journey and Welcome!!!!

Brynn Homer
Momma to Alex (gator) HLHS

[Cyndlouwho]

Our initial diagnosis with Dylan was Tetralogy of Fallot, but that changed to Truncus Arteriosus at the echo. He was my 4th VBAC. I wondered about having a C-section with him since they typically don't like to induce labor after a C-section. My doctor surprised me by deciding to go ahead and induce labor. He decided to induce labor rather than let me go on my own just for the reason that the hospital could be prepared for us and for Dylan without having to feel rushed or anxious about getting the right people there to take care of him. With the time we spent with Dylan in the hospital after his birth, I was glad I didn't have to recover from a C-section as well. My oldest child was premature (and my C-section) and it was hard to get the rest I needed from the C-Section with the time spent at the hospital with him.

[JoeyG]

Hi Carinne -- welcome to the heart club. We found out about a month or so ago that our baby has a CHD too; she's due at the end of Feb. Our OB wasn't affiliated with the U, so we made the switch to Dr. Byrne once her diagnosis was confirmed -- she's wonderful. I agree with the other moms, ask her what she thinks you should do about CNM vs. OB. So far with each appt with Dr. Byrne, a CNM has done the initial check-up, then Dr Byrne comes in for a review ...so you might be fine sticking with the CNM.

Also, they've told me that a vaginal delivery is fine for a CHD baby (our 1st was a vaginal too) -- but, they will induce us a week or two early so they've got the cardiac team ready when she's born (like Brynn said, to get her stabilized and on the prostaglandins asap -- not sure if your babe will need that).

Good luck to you on this journey. This group has been an absolute Godsend for us -- all the moms are just fantastic, and have lots of information, encouragement and understanding. I don't know what we'd do without this "healing hearts club!!"

Take care,

[randall]

Hi Carinne,

Welcome. I'm sorry to hear about your baby's heart. My wife and I just had a baby boy in October with Tetralogy of Fallot. He had the BT shunt placed and now he's a happy healthy baby. He's going to have the total repair in 5 months or so.

My wife delivered at the U and they were very good. We didn't know anyone up there as we live in Utah County but it was a very good experience (they were much better than our regular OB at Utah Valley with our first child). Ultimately it's up to you, I'd consult with the Doctors and figure out what's best for the baby and go with it. When you deliver they will probably want you in one of the rooms that has the window into the NICU so they can get the baby in there ASAP. I'm not sure if they have tubs in there or if they can put one in there. Just ask lots of questions and let us know if you need anything!

[cmooredavis]

I can't help with some of your questions as I was not pre-diagnosed with my heart baby and we were emergency transferred to Primary's when he was 7 hours old.

As far as the birth goes, I would base decisions off the recommendations of your doctors. One option might be to deliver with the doctor but hire a doula (trained birth assistant) to help you experience the birth you are hoping for. You can just google "Doula Utah" and find lots of people. We had my second daughter with a doula and it was a great birthing experience.

Good luck and let us know what else we can do to help you!

[Carinne]

Our initial diagnosis with Dylan was Tetralogy of Fallot, but that changed to Truncus Arteriosus at the echo. He was my 4th VBAC. I wondered about having a C-section with him since they typically don't like to induce labor after a C-section. My doctor surprised me by deciding to go ahead and induce labor. He decided to induce labor rather than let me go on my own just for the reason that the hospital could be prepared for us and for Dylan without having to feel rushed or anxious about getting the right people there to take care of him. With the time we spent with Dylan in the hospital after his birth, I was glad I didn't have to recover from a C-section as well. My oldest child was premature (and my C-section) and it was hard to get the rest I needed from the C-Section with the time spent at the hospital with him.
My midwife mentioned possibly inducing also, so that the baby can be born during normal hours. They ended up using pitocin to speed up my 2nd child (VBAC), since I had been in labor 18 hours and had stalled at a 4. It worked well and 8 hours later I had my little boy. Hopefully this labor will go faster, if we go that route, because 26 hours was brutal!