Boston and other news

Boston Children's Hospital - In-Utero Procedure
Yesterday one of the guys from the team in Boston called. We talked for quite some time. Our baby is a candidate for an in-utero procedure to put a stent in her atrial septum to allow more blood flow to get through. The purpose of doing this is to keep her lungs from deteriorating from all the blood they believe is backing up into the lungs. The better her lungs are at birth, the more stable she'll be once she gets here. If her lungs are not doing well once she is born, she may not even qualify for the three-part surgery her heart will need. Her lungs have to be doing well.

They have only done about 30 of these in-utero procedures for the atrial septum. There is a 10% chance of fetal demise with this procedure. There is risk to me, but it seems to be pretty minimal, and they have never lost a mother from this surgery or had any major complications to the mother. There is only a 50-60% success rate with this particular procedure, and this procedure is so new, that they don't have a lot of data on how much this really ends up helping the baby long-term. Yes, it will help stabilize her, but it doesn't fix anything in particular. She will have lung damage regardless, we are just trying to minimize the lung damage to give her a better shot once she's born. There has been another lady from Children's Mercy who also had a successful in-utero procedure done at Boston for the atrial septum, but her baby still only lived 10 months. Though 10 months was longer than they had expected. But, I also have talked with another woman who had the same procedure done, and her baby is a couple years old now. So, you just never know, but we want to give our baby that chance.

The thing I was hoping to avoid was an amniocentesis. Boston does not usually require an amnio to do this procedure, but they are asking me to have one done. This is due to the fact that there are so many other issues our baby has had in-utero (hydrops, cystic hygroma, dilated kidney) that they would like to know if there are any genetic issues going on. The reason that is important is because if they find out our baby has a genetic issue that stacks the deck even more against her, then they will re-think whether or not this procedure would be worth the risk. Basically, there's no point in going through the expense, time and risk of this procedure if there's an underlying genetic issue that will more than likely claim our baby's life once she gets here regardless of whether or not the in-utero procedure was successful. Normally, the more issues you have in-utero, the more likely they fit into a genetic or chromosomal abnormality.

So, next Thursday, we will have a very long day at Children's Mercy with four different appointments starting at 11 a.m. and hopefully leaving by 5, and one of those things will be having an amniocentesis done. The doctors I am working with do a lot of amnios and have rarely seen anything bad happen as a result of them. The statistics for them are about 1 in 500 could suffer a miscarriage, which is less than 1% and is definitely a lower risk than the Boston procedure. Some may wonder why we would risk these procedures (amnio and Boston) if there's a chance of miscarriage. We trust our doctors and their insight, and we know that we have some of the best doctors in the world regarding pediatric cardiology looking at our daughter's heart scans and making their best medical judgment. Boston Children's Hospital is #1 in this specific area in the entire country. They feel, and we feel, that this in-utero procedure would be a crucial procedure for our daughter to be able to have a chance at survival once she is born. How can we turn it down? And, if we end up being that small percentage of something not going right, then at least we know we were honestly trying to do everything we could for her. I hope that makes sense. I am terrified of the amnio procedure, but supposedly it just feels like getting a shot... we'll see :/ We trust the doctor's professional opinions, but we also trust in our God who is a miracle worker. I read somewhere, it said, "Trust the doctors but don't believe them." In my mind, I trust the doctor's are doing their very best at interpreting everything they see and trying to give us realistic expectations, but I don't believe them because I know our God is bigger than what an echocardiogram says. It's finding the balance of the grim possibilities that the doctor's are telling you versus the fact that God DOES perform miracles and CAN make what seems impossible POSSIBLE!

Boston is planning on getting me in for the procedure in 3-4 weeks. They will have to coordinate their group of doctor's schedules as there are a lot of people involved, this is a tricky procedure, and they need everyone available and ready to go. I'm sure you can imagine how tricky it can be to align many top doctor's schedules! I will be in Boston for four days. And, I should note, even if I go out there, there is always a chance that they could find something while I am there that would make them not want to do the procedure. Whether that's something with my health, the baby's position, etc. That doesn't happen often, but it is a possibility.

 

We are excited to have this opportunity but also nervous and scared. There is no guarantee it will be successful. We will have to find full-time childcare for our two girls for four days which is stressful to think about. Mark, of course, wants to be in Boston with me. Hopefully we can get everything coordinated, and it all goes smoothly. But, we still have to see what the amnio comes back with before we know for sure if we'll be going out to Boston.

Cord Blood Registry

I also found out that through Cord Blood Registry, they have a Newborn Possibilities Program where our baby could have her cord blood banked completely free (no processing fee or storage fees) for the first five years. So, I contacted them and have paper work I will be sending into them.

The Mayo Clinic

The Mayo Clinic is also doing research and clinical trials on using cord blood to help strengthen the right side of the heart in HLHS children during their surgeries. I am in contact with them to possibly become a participant. I have a web conference call with the head doctor next Friday to further discuss. Regardless if our baby makes it or not, I would at least like to help further science in hopes that more kids with HLHS and RAS can be better helped in the future. I don't quite understand everything yet that the Mayo Clinic is doing, but I will be learning a lot more very soon. Overall, their goal is to use cord blood during the open heart surgeries to strengthen the right side of the heart in hopes it will prolong or even take away the need for HLHS kids to need heart transplants down the road. They are very passionate and excited about what they are doing.

Other Exciting News :)

Oh, and we are super excited because we close on our new house May 30 and move in June 1! We cannot wait! We are ready for our own place, no more commuting 2.5 hours round trip and to start getting back into a more normal routine. Though we have very much appreciated the generosity of Mark's parents :)

Ways to pray for us:

1. That we will have no issues from the amniocentesis next week and that there are no genetic issues to discover.

2. That everything for Boston would work out smoothly: continuing to stay a candidate, finding childcare, Mark taking off work, the procedure being a success, no complications.

3. God continuing to prepare our hearts and strengthen us. This is not the worst possible nightmare I could imagine happening to us as there are a lot of terrible things happening in our world, but that doesn't make it any easier, less painful or less devastating-it just helps put life into perspective for us.

4. For us to remember that she belongs to God, and His plans/ways are higher than ours.