At this point, Brian and I have come to appreciate the unsurprising, and that was pretty much what we were given during our appointment at Boston Children’s Hospital (BCH). The pediatric cardiologist (PC) at BCH was happy with the images they were able to capture during Theo’s echocardiogram, and we were provided with essentially the same results that we had received at Strong Memorial Hospital in Rochester a week prior. We did, however, discuss a couple of treatment options that would either be preferable or only available to do out of BCH. The challenge is that we will not know which treatments will be best for Theo until he is born and continues to grow.

The following is a brief description of the treatment options that we discussed with the PC while at BCH:

1. Patent Ductus Arteriosis (PDA) Stent:  If Theo is in good enough condition following birth, he could be given a PDA stent instead of a BT shunt to keep the ductus arteriosis from closing. The PDA stent would be preferred because it is less invasive and would not require an open heart surgery.  The less time Theo spends in surgery the better, since less recovery time would mean less developmental delay.
2. Biventricular Repair: The typical treatment of single ventricle defect includes a series of surgeries that ultimately results in blood flow to the lungs with only one functioning ventricle. As an alternative, successful biventricular repair would restore ‘two-ventricle’ circulation.  Because Theo technically has two ventricles (albeit two ventricles that aren’t separated by a wall), he may be eligible for this treatment option.  The biventricular repair would put an artificial wall between Theo’s right and left ventricle so his heart could function more like a normal, two-ventricle heart.  However, because the right and left ventricles are inverted, it makes the biventircular repair more complicated than normal.  Again, time will tell whether this will be a viable option.

In addition to hearing about some of the treatment options available at BCH, we also learned more about what our lives would look like if we pursued treatment there.  We would need to be in Boston around Week 37 in case Theo makes an early debut.  Once born, we will be able to hold him for a few minutes and then he will receive medication through an IV to get him ready for his first procedure, which will take place about a week later.  Fortunately, breastfeeding should be an option and Theo would be able to visit with family and friends before undergoing his first procedure.

The first procedure will be either the BT shunt or the less invasive PDA stent.  If Theo isn’t able to receive the PDA stent and thus undergoes a surgical procedure to put in place the BT shunt, he would need to be in the hospital recovering for 4-6 weeks.  If he is able to receive the PDA stent, the recovery time would be cut in half.  We are fortunate enough to have great friends and family in and around Boston for support during this time, as well as housing made available through BCH and some very dear friends nearby. We don’t have all the details down yet, but we are lucky to have options that make receiving treatment in Boston a workable possibility.

We also spoke with the PC about what home care will look like once we are in a position to return to Rochester.  The PC reassured us that our home would not need to be a hospital.  There will, however, be some at-home monitoring that we’ll need to do twice a day.  Additionally, a nurse from Strong will visit briefly twice a week for normal check-ups.  Although Theo’s treatment will be an ongoing process, it is not as daunting as we originally anticipated, and we are feeling as capable and optimistic about it as we ever have.

Over the next few weeks, we will be weighing our options and eventually making a decision about whether to deliver and receive treatment at Strong or BCH.  We’ll keep you posted.  Otherwise, hopefully the next few months are uneventful as Theo continues to develop in the womb.  In the meantime, we’re feeling his kicks and sending him lots of love.