When your child is born with a significant birth defect

Ian writes about his first-born's brain surgery and how it has altered his perspective on fatherhood.

Every father thinks that his daughter is the most special in the world.

But the month of April always reminds me that I do have one of the most exceptional daughters on the planet. Eight years ago this month, we were told that our first-born child could be missing half of her brain.

When Sonia was 28 weeks pregnant with Elissa in April of 2004, we got a call from the doctors that something was wrong with the ultrasound pictures of the baby.

“There is a significant portion of the brain that we’re not seeing on the image,” the doctor told us, with a very grim face.

Usually at this point, you would expect a joke out of me. Something like me turning to Sonia and saying, “Missing half the brain? Sounds like that comes from your side of the family.”

But I was completely tongue-tied; and so was she. Our world had been completely rocked. This was our first pregnancy and neither of us had anticipated any problems. There was no history of birth defects on either side of the family and the pregnancy had been fairly uneventful until that point.

The doctor explained to us that there was a massive dark spot over half the brain and it would need to be monitored on a regular basis. They suspected it was a massive cyst, but they would need to do an ultrasound test every two weeks to check if it was getting bigger.

The news got worse as the doctor informed us that they could not do anything until after the baby was born. There was no way to get a further diagnosis or treatment until then. So for the next 10 weeks, we could only speculate that the baby would be born with Down syndrome, a massive tumour or another significant birth defect. At that point, the doctors could not rule anything out for us, which was not comforting at all. We tried to get answers about how this might affect the baby’s quality of life — but we received nothing but “wait-and-see” responses.

So every two weeks, we returned to the high-risk pregnancy clinic in Ottawa to undergo ultrasound testing to see if this dark shadow on the brain was getting any bigger. We decided to tell only a handful of people about this development, because we didn’t want the hassle of updating everybody on a regular basis. Those 10 weeks felt like 10 months, as we waited to find out how bad this diagnosis was going to be. I spent far too much time on Google, typing in terms like “baby + brain cyst + ultrasound” — and I never liked any of the results that popped up. (It’s a scary time when no medical professionals can give you a straight answer and the Internet rarely helps.)

Finally, Elissa came screaming into the world on Canada Day 2004 — and within a couple of days, they set up an MRI for her at the Children’s Hospital of Eastern Ontario.

That is where our luck started to change and the diagnosis became a little more positive. The head neurosurgeon looked at the MRI image of Elissa’s brain and confirmed that half of it appeared to be missing because of a massive arachnoid cyst. He confirmed that the cyst was one of the largest he had ever seen in a newborn baby, but he also suggested that it was treatable.

His theory was that her entire brain was actually there — but it was being squished down by this cyst. He figured if he could get in there and collapse the cyst, the missing portion of the brain would reappear. The way he described it, the brain was being pushed down like an accordion.

He gave us a couple of options: We could do nothing and see if this cyst caused seizures or any problems. Or we could do a pre-emptive surgery, where he would install a shunt in her brain to collapse the cyst. He said while there were significant risks with any paediatric neurosurgery procedure, there was a good chance that a pre-emptive surgery could help in this situation.

I remember asking him what he would do if it was his child and he responded very quickly, “I would do the surgery.”

We debated the procedure for 24 hours, because handing over your week-old baby for brain surgery should not be a snap decision. In the end, we felt like our best bet was to trust the neurosurgeon and opt for the brain surgery instead of waiting for Elissa to start having seizures or other symptoms of brain trauma.

Handing over that child to the surgery was so difficult. Elissa was roughly the size and weight of a regulation NFL football and yet she was supposed to be strong enough to handle brain surgery at nine days old. I cried as I handed her over to the staff because I wasn’t sure if she was going to make it through the procedure.

A few hours later they told us the surgery had been a success — they were able to collapse the cyst as they had hoped. She spent the next week at CHEO, recovering in intensive care. It was a really tough time for Sonia, who had to stay there and learn how to breastfeed for the first time with a baby who had just undergone a massive operation.

I’d like to say it was smooth sailing from there, but just seven months later Elissa had to undergo a shunt revision as the original mechanism had a failure and the cyst started to grow back. But since that time — from seven months old to seven years old, she’s been a picture of health and happiness.

She started reading books when she was four and she tells jokes that are far beyond her age. My favourite one came when she was six years old and she asked me, “What kind of snake wears a hard hat? (Answer: A boa constructor). She comes up with stuff like that all the time and it’s so remarkable, when you consider the prognosis looked so grim for her when she was in utero.

One of my proudest moments came about four years ago, when CHEO phoned us to come in and speak with another family that was facing the exact same situation as we were. Their newborn had been diagnosed with an arachnoid cyst and the family was very hesitant to hand their child over for surgery. The hospital staff wanted us to bring in Elissa so that we could show them that there was light at the end of the tunnel and that brain surgery on a tiny newborn can be a success.

I know a lot of my blog entries here on this website have been fun and irreverent, but I want to spend this month talking about how Elissa’s brain surgery has altered my perspective on fatherhood and as a professional at work.

And I hope you’ll forgive me for thinking that my daughter is truly exceptional.

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