Wow. Where to start. We are absolutely exhausted from today’s Toronto adventure. Hopefully we won’t have to answer any more doctor’s or nurses’ questions for a while (well, at least a week), and hopefully you aren’t offended if we draw a blank stare or don’t respond to your questions. We are questioned out.
We left at 5am this morning to make it to our 8am appointment at Sick Kids in downtown Toronto, and didn’t get home until around 8:30pm.
We had a fetal echo first, which took about an hour and a half. The head of cardiology at Sick Kids then came in at the end to take a few more photos on the echo. He left to review some more things and then met us in the counseling room to discuss the results along with a few other Fellows and nurses. Here is a summary of what he shared:
- Leo again, does have CCTGA along with some other abnormalities which are difficult to explain (like an extra SVC, etc.).
- Leo’s heart rate is around 69bpm, which means it hasn’t changed much over the weekend, but if it drops below 55bpm his heart could possibly fail.
- He confirmed that Leo has a complete AV heart block (also called CHB or Congenital Heart Block) – which is very rare to occur during pregnancy.
- One of the VSDs in his heart is very large, around 6mm.
- Because of the combination of the CCTGA (which Sick Kids only sees about 3 to 4 cases a year), the CHB, and the large VSD, Leo’s condition is very complicated.
- He will eventually need a pacemaker, though hopefully not immediately after birth.
- We will be seeing the cardiologist again on November 9th for another fetal echo as well as a MRI (which they were able to put under as research since our baby has such a rare condition and this special MRI was developed at Sick Kids – so it will be of no charge to us! Sweet!)
After he left, we met with a nurse coordinator who took us on a tour of the Sick Kids hospital, answered questions concerning the birth plan, and referred us to Mt. Sinai.
We then walked to Mt. Sinai hospital and had another short ultrasound, met with another MFM OB (our official OB now), and some social workers. They also set up appointments for us the next month. Our OB wants Lauren to come back to Mt. Sinai weekly.
The Fellow OBs who were performing the ultrasound told us that Leo was above the 95th percentile in estimated fetal weight, already weighing a hefty 2750 grams/6 pounds! Haha! The average baby at 32 weeks weighs around 2.5 to 3.8 pounds.
Because of Leo’s heart block, and the difficulty of monitoring his heart during a normal birth, we are having a scheduled C-section, most likely on December 2nd at Mt. Sinai Hospital. After birth, Leo will immediately be taken across the street to the Cardiac Unit at Sick Kids where he will be monitored. He will most likely not need to be in NICU or on an incubator. They said if he is healthy, able to breath and eat on his own, without his heart pumping too much blood to his lungs, he will probably be able to go home after 3 to 4 days. But if his heart rate drops, we could be there for a few weeks (they said we would most likely be able to stay at the Ronald McDonald house during this time).
Leo will eventually need a pacemaker, and possibly a pulmonary artery band, put in between birth and 6 months.
After 6 months the cardiologist said he will most likely need the Double-Switch heart surgery (which is basically switching his heart back to function like a normal heart), as well as patching the huge hole in his heart. The reason for this is because his his right artery would be working too hard, and around 30 to 40 years of age his heart could fail because of that. This is a major heart surgery, since it is basically reconstructing Leo’s entire heart, but he said the survival rate for this surgery is around 95%.
Hopefully some of this makes sense. Lauren will be going back to Toronto next Monday for another ultrasound.
Thank you again for everyone who prayed for us today! The hardest part was sitting in waiting rooms and talking to doctors all day. So exhausting! We are so thankful to be back home tonight, and being back in classes again tomorrow.