Frequently asked questions

Through this whole process there have been a few questions that I have been asked a few times. I totally understand why. This diagnosis is so rare and complicated that its hard to understand how it all works.

Since you know all this now, why are you not doing a surgery on you with her in utero?

There is that option. You usually have to go to Boston to have that procedure done and there are many risks for not only myself but London. Her chances are much better outside the womb. Our surgeon in Dallas is one of the top 5 CHD surgeons in the nation and his success rates are over 85%. I would much rather give my child those odds than something that is "risky" and "new".


Will London be born naturally or a scheduled c section?

There is no medical reason a Hypoplastic baby would need to be taken by c section. She can be born naturally no problem. I actually pray that she will be. That will allow me to be over at Childrens with her sooner and not have surgery right when my baby does. This would knock off one stressor. Of course it's all depending on how I do. I pray I make it to her 39th week (when they will do a scheduled induction) and can deliver her naturally.


Will you get to hold her? how soon will they take her away?

Trey and I will get to hold her and take some pictures with her for a little bit if she's looking stable. She will immediately be sent to the NICU to stabilize her before her transport to the CICU at Childrens. She will be in my delivery hospital for a few hours (if she looks good) and will be at Childrens the same day. Yes, we will get to touch her and hold her, take pictures and then she will be transported.


How can she wait a few days until her surgery?

There are two holes that all fetuses have in utero that is allowing her to get blood flow just fine right now. Immediately in the NICU they will start a tube through her belly button that administers medicine that tricks those two holes to stay open. The holes naturally stay open for a few hours. They will take extra caution and start the medicine very soon. The medicine makes her body think she's still in utero. Blood will flow through those holes and she will have adequate flow. They will monitor her with echos, oxygen levels, feeding tubes, etc. until her surgery a few days after birth. She will always be watched for every little vital sign. The medicine and nurses will be keeping her alive until her surgery.


After her birth they will do more testing a and watching her to make sure she had no unseen genetic disorders or all her bodies functions are working properly. Her chances of having anything else unseen is 2-3%.


After I am released from my labor and delivery hospital I am free to be over at Childrens with her. My doctor mentioned yesterday how I can have a "free pass" to visit Childrens while I am still admitted to the other hospital. I guess they will take me by wheelchair and a nurse to take me to see her if I would like. Lucky for us there is Skype, for many reasons.


Will she have to have the THREE surgeries?

Yes. The Hypoplastic heart surgeries are to have a series of surgeries to create the heart to function as a single ventricle. Your ventricle that is underdeveloped will never be able to adequately function correctly. You are working on a baby so each section is to do a series while the heart gets bigger. They are called the Norwood, Glenn and Fontan procedures. each are named after the doctor that created them. All three are a chest surgery, none go through the legs. This also creates less stress on the heart. She will have to have the three, and hopefully no more.


Will you be able to breast feed?

Yes, but after her surgery and she's strong enough to eat. I will pump and save to then teach her the bottle. If she is not gaining they will change her to high calorie formula. London must gain weight good and continue to grow. Logical reasons of that are developmental, heart growth and strength. She will be watched big time for feedings and gaining. Obviously in the hospital they will check those things but I will also check when we bring her home. She will be weighed every day and I will check her pulse oxygen levels.


How did this happen?

"Bad luck" is a common word you will hear for this diagnosis. The main culprit is her tricuspid valve never developing and her heart received very little blood flow in some parts. No flow, no grow.

What's her heartbeat now?
London's heartbeat is usually 147 the past few weeks. That is what normal babies in this stage of pregnancy are. Her heartbeat shows no sign of difference.

I might have left some of your questions out but I find that these are some many of you wonder about. I hope this helps you understand better and understand our game plan for getting London here!