Our story started when I was 20 weeks pregnant. We went for our anatomy scan where we were told the genders of our twins were wrong. The previous technician had told us we were having boy-boy twins, but this technician told us we were having boy-girl twins.

Once she was finished with the scan, she said, “I will show the doctor the scans to see if you need to come back to the Maternal Fetal Medicine (MFM) clinic to be followed.” Moments later, an MFM doctor walked through the door and explained to us that the twins had abnormal skull shape and that they had Dandy-Walker syndrome. We started crying, we didn't know what to think. She told us we should abort the pregnancy. Right off the bat, we said “This is not an option.”

At a later appointment, she explained that she had misdiagnosed our twins and now said it was craniosynostosis rather than Dandy-Walker. And then at another appointment, a neurologist told us that one of the twins’ cerebellar vermis was pushed up.  We braced ourselves for the rest of the pregnancy, being uncertain and confused about what to expect.

At 27 weeks, we went to an obstetric appointment where I was sent straight to the Royal Alex because one of the twins’ water broke. When we got there, we found out that indeed I was in labour. The nurses and the doctor in labour and delivery gave me steroids and other medication to stop my labour. I was on bedrest from there on.

The next day, I was sent downstairs to finish my hospital bedrest in antepartum. The goal was to get to 34 weeks but we didn't get that far. At 32 weeks, I told my husband to go get my nurse because I was contracting. Two days later, I was whisked off to the operating room where the twins were born by C-section. This was the only way they both would survive.
 
Henry and his sister were born at 32 weeks and 2 days gestation with a rare head condition called craniosynostosis. We were told that we had 50/50 chance of losing both the twins in the first year.

Henry spent two and a half months in hospital, the first two of those months being in the NICU. We were living day-to-day not knowing if Henry needed surgery to help give his brain more room to grow or at the very least get a shunt to drain cerebral spinal fluid. His neurosurgeon didn’t know what he was going to do.

Henry spent six short days in the Stollery NICU at the Royal Alex. He was then transferred to the David Schiff NICU at the Stollery to be closely observed. He was on oxygen for a short period of his life. He was given TPN and a lot of other things through IV to help him grow and was NG fed for the first little bit of his life so he could get the nutrients he needed.
 
Henry laid next to his sister Charlotte’s bassinet for a month and a half. His sister sadly passed away.

Henry was diagnosed with epilepsy shortly after being home as he started having seizures. He was also diagnosed with mild hearing loss and we are now waiting for a referral to see an ENT to drain the fluid in his ears. Henry has been home for a long time now. At 14 months old, he is now doing well and has outlived the odds we were given of survival.

Caitlyn Baird – Henry & Charlotte's mom