And Fetal Intervention is Back On!

So, we’ve had a turn of events. When Boston said no to a fetal intervention, we had two other doors open at University of Michigan (Motts) and Children’s Hospital of Philadelphia (CHOP) to review our baby’s scans and possibly do a fetal intervention. Both of these hospitals have only done 6 or 7 of our specific procedure whereas Boston had done 30, but both hospitals are at the top of the list for pediatric cardiology and are great places for care.

Michigan said yes. I have talked to their surgeon as well as their pediatric cardiologist several times over the phone as well as via email. They have been wonderful so far. They have actually done this specific procedure on a little girl who also had Turner Syndrome (TS) along with the Hypoplastic Left Heart Syndrome (HLHS) and Restrictive Atrial Septum (RAS). I was actually able to get in touch with this little girl’s mom through a TS support group I am a part of through Facebook, and we chatted on the phone a couple nights ago for about an hour. Her little one is 4.5 years old now, and she feels it completely saved her little girl’s life. That’s what we are praying for, too.

CHOP (as well as Boston) basically said no because of her TS. They just don’t do the procedures on babies with chromosomal abnormalities. Since Michigan had success with it, we feel comfortable with doing this with them. We spent a lot of time in prayer, and I know we had lots of people lifting us up in prayer while we were coming to our final decision on whether or not to say yes to this procedure. There is minimal risk for me. I will be given an epidural and will hopefully be discharged the same day. The risk is for our baby. There’s always a chance of fetal demise-whether she just doesn’t handle the procedure well or they by accident nick an artery or something in the heart that causes major problems (which could also happen in any of her surgeries once she is born). Her heart is about the size of a grape right now, and the atrial septum is so very tiny. This is a tricky procedure for sure. They will give our baby a morphine-like medicine for pain as well as another medicine to keep her from moving. In-utero, I supply everything she needs-oxygen, nourishment, etc.-so this procedure actually requires a lot less work for her little body compared to doing it once she is born where she would need to be sustaining herself.

We will be going to Michigan Thursday, July 11. We will have appointments on Friday and Monday, and then the procedure will be on Tuesday, July 16. We will fly home the next day. They will make a small incision in my skin on my belly and then place a needle through my uterus and into the baby’s atrial septum. They will make a hole and then use a balloon to make it as big as they can, all guided by ultrasound. It still won’t be as big of a hole as should normally be there, but it will hopefully be big enough to release some of the pressure in her heart, which will in hopes make her more stable at birth. This is a high-risk procedure, but she is going to be high-risk regardless of whether we do this procedure or not. There’s always a chance that the hole they make could end up closing up down the road, but that’s part of the risk, part of the experimental procedure. They will do the best they can, and then we will just wait and see. There’s also a chance that we could get to Michigan and end up not being able to go through with the procedure. Whether there is something with me OB-related that they aren’t comfortable with or if they can’t get the baby in the right position or her heart rate doesn’t do well, etc. We could get into the procedure and have to stop for various reasons.

We feel God opened these doors and shut the ones that needed to be shut to direct us to the best place for our baby. We prayed a lot about this and definitely played the “what if” game. But, through this whole journey, we have said we will do whatever we can for her that is medically available. This in-utero procedure is going to be a part of her journey. We are praying it goes perfectly, and she sails through it. But, we are also aware of the “what if” of this procedure. What if we lose our baby girl due to this procedure? How will we handle that? Will we blame ourselves? Will others look at us as a baby killer, rolling their eyes for doing a procedure that is still considered experimental? I don’t know. But, I do know that if we don’t give her this chance, I will surely regret it. We did not go into this decision without prayerfully considering it and crying out to God to lead us to the “right” decision. We are doing what we think as her Mom and Dad is the best thing for her right now, to give her a better chance at life once she is born. We are doing everything medically available for her even while she is still inside the womb just as we would do anything medically available to save either of our other two daughters’ lives today. Even though our little one has two severe heart defects and TS, her life still has purpose and value! We want to do all we can to protect her life. We are praying without ceasing that this goes well. Please join us.

So, we are in the process of working with Motts to get our travel arrangements all set up, and we even have some of our best friends in the whole world planning on making the trip to come spend time with us while we are in Ann Arbor!

New info from recent appointments:

1. We think her restrictive atrial septum (restrictive meaning it’s not closed off just much smaller than needed) may actually have turned into an intact atrial septum (intact meaning the hole no longer seems to be present at all).

2. My amniotic fluid level is on the high end.

3. My scheduled c-section will fall sometime between September 9-12, depending on the coordination of doctor schedules. Even if this fetal intervention is successful, she may still need immediate intervention, but she will hopefully be more stable and have a better chance at surviving what’s ahead. Again, we just have to wait and see once she gets here.

Ways to pray for us:

1. Continued peace about our choice for fetal intervention and that God would calm our nerves.

2. Our baby girl would make it through the fetal intervention just fine.

3. Mark’s work would continue to be understanding and would help work his schedule around all our appointments, Michigan, the delivery and our little girl’s hospital stay(s).

4. A name for our baby girl! LOL! We are still nowhere with a name. Sigh. I really didn’t expect it to be this hard!

5. Praising God for our new church family who has taken us in with open arms and are stepping up in ways I couldn’t have imagined to help us through this time. They have been a huge blessing to us.

Again, sorry for the length... I should probably start blogging more frequently to avoid getting so wordy! Special thanks to those of you who stick it out and read to the very end!