November 9, 2009

Dear family and friends,

The pregnancy has been progressing well, with the baby due March 6th, and his past Friday, we had our first ultrasound. The ultrasound, however, indicated some possible medical issues, and we were scheduled for a more detailed ultrasound this morning where the issues were confirmed.

The most serious issue is a Congenital Diaphragmatic Hernia (CDH). The diaphragm separates the lower organs from the chest cavity, and in the case of a CDH, there is a hole in the diaphragm that allows the lower organs to move into the chest cavity. This affects the lungs, possibly delaying their development, which principally happens between the 20th to 26th weeks. Rebecca started her 24th week last Saturday. For more information on CDH, see http://www.childrenshospital.org/az/Site476/mainpageS476P0.html. For about ten years, one possible remedy was in utero surgery, but this is no longer practiced as it was not found to increase health outcomes. Current practice is to deliver the baby through c-section as early as possible and perform immediate surgery to fix the hole and give medical help to the lungs. In our baby's case, the hole is quite large, which increases the likelihood that the lungs will not develop. The ultrasound doctor's prognosis is that the baby has less than a 50% chance of surviving birth.

There is also a second issue. There are at least six indications that there may be a chromosomal issue, would likely mean that the baby has Down's Syndrome. None of the indications on its own is of great concern, but together indicate an increased possibility. The six indications our child has are a hole in the heart (which is not uncommon and can close naturally), two cysts in the brain (which, too, are not uncommon and can disappear naturally), extra fluid in the brain, clenched fists during the ultrasound (baby's will naturally clench their fists, but a child with Down's will do this more consistently), the baby is quite small, and there are only two blood vessels in the umbilical cord when there should be three.

Both the ultrasound doctor and our wonderful, pro-life family doctor recommended getting amniocentesis in a few weeks, when the procedure no longer poses any real risk to the baby, to clarify the chromosomal question. At that time, an ultrasound would also provide better information on the baby's lung development and whether any of the chromosomal indications persist.

We don't normally find out the sex of our babies until they are born, but in light of this news, we did ask, and the baby is likely a girl, which is how we are now calling her. When amniocentesis confirms the sex of the baby, we will likely name her so that we can bond with her as much as possible throughout this whole process.

The ultrasound doctor did mention the possibility of terminating the pregnancy, but he accepted our decision to do whatever we can to help our child live. It is possible that her condition will be severe enough that medical intervention would be fruitless, in which case we would likely deliver her naturally and enjoy whatever time God gives us with her. This possibility that our newest princess will not live is real to us, but until we have greater clarity in a few weeks, we are praying and hoping that the baby's condition improves.

We normally deal with the Civic location of the Ottawa Hospital, but in order to be close to the Children's Hospital of Eastern Ontario (CHEO), Rebecca is being admitted to the high risk unit at the General location. We are preparing ourselves for many visits to obstetricians, pediatric specialists, and geneticists and look forward to occasional reassuring visits with our family doctor. The baby would likely have to be operated on at Sick Kid's in Toronto, and our family doctor raised the possibility of even moving there already because he knows two excellent high risk obstetricians who practice there. If our baby's health would benefit from such a temporary move, we would consider it, but a more likely scenario is transferring to Toronto about a month before the birth, delivering the baby there so that we are close to the pediatric specialists, and making day trips for appointments leading up to the birth. The alternative is delivery at the General, stabilization of the baby at CHEO, and then a transfer to Toronto for surgery. If the baby does have surgery in Toronto, we would likely stay in Toronto while it recovers.

We shed a number of tears on Friday and more this morning, especially as we walked from the ultrasound to our family doctor's office. We thankfully had to wait a little while to see him, which allowed us to calm down, and he was much more positive than the ultrasound doctor had been. As we were waiting, Harold heard the refrain of a song playing on the radio that repeated the words "beautiful girl". The song probably had a romantic connection, but for him, the words encapsulated how we view our latest blessing: she is a beautiful girl, our beautiful girl, no matter what happens. She was very active in the womb, and we take comfort in the fact that she is not suffering.

We told our children some preliminary information on Friday and will be keeping them up-to-date on the most important news. We are praying about this as a family and will come through this as a family.

We apologize for the impersonal nature of this email, but it is difficult, and time-consuming, for us to repeat our sad news to everyone who cares about us. We appreciate your prayers, especially in the crucial few weeks ahead, and we will send out follow-up emails with any updates.

To God be glory in all things.