October 2008

Snohomish, Washington

Emma & Taylor at the Farm

Here are some bits of information and thoughts to give you some understanding as to what's involved in making the decision whether to go forward with the separation of the girls:

*The hardest decision a parent would have to make is to have to make a decision. If there isn't a possibility of separation, there isn't a choice to make.

*An average child with congestive heart disease would live to late childhood, early teens. The shared heart these girls have is considered below average.

*One more test is needed which would measure the pressure in Emma's heart. If it's too high, then the possibility of separation would be taken off the table completely.

*They each have the anatomy to support a transplant heart. Artificial hearts work as an attachment to a heart--not an option.

*It's a small window in which to perform the separation. Too much longer, separation cannot be considered.

*With several preliminary surgeries, separation and recovery, the time frame would be 6-9 months minimum. How do we then manage family life, work, school for the big kids, etc.? Do we split up the family or not, in order to keep stability for work and the big kids?

*The doctors never said they should or should not separate. They said, "We can support you through this process. But the decision is up to you."

Hospital Consultations

One of the most frequently asked questions would be for us is, "So, when are they going to be separated?" I suppose I would wonder the same thing if I ever saw conjoined twins. At the moment, there really isn't an answer to that question. We have been in Seattle, which also happens to be home for grandmas and grandpas, for the last 2 weeks completing very preliminary testing in exploring this possibility. With the information and discussions that we've been able to have with a team of surgeons there, we realize more fully the great miracle it is for our daughters to be alive and happy and the blessing it is for our family. In theory, we may have the potential for separation within a small window of time to do so, and we also have a better idea of an expected life span if they remain conjoined living with congestive heart disease that will, in time, become heart failure. A decision to have them remain conjoined needs to be weighed as equally heavy as considering separation, something we had not expected to deal with. But we do feel confident that for now, we should continue forward and consider very seriously and prayerfully our options and the choice that needs to be made.