Could You Cope If Your Baby’s Brain Was Outside His Skull?

When Mary Gundrum’s son was born, he had a Tessier midline facial cleft, which means the sides of his face didn’t fuse together properly during early pregnancy, causing it to split down the middle. Baby Dominic also had a rare cranial abnormality, known as encephalocele, meaning that a sac of brain tissue and fluid formed outside the skull. This split his nose in two with a fluid-filled bubble and some of his brain matter sagged into his mouth.

 

Needless to say, though Dominic was not in immediate danger, family wellness was still an issue for Mary, and she was concerned that he might experience complications like a puncturing of the sac or infection, which could threaten his wellbeing. However, thanks to a six-hour craniofacial surgery, you’d only know Dominic’s wellness was ever at risk by a fading thin scar on his forehead. Mary says ‘It’s super-exciting to think about his future. I never would have imagined such a small, tiny line that’s already continuing to fade. It’s beautiful.’

 

The surgery that saved Dominic’s face in December was led by Dr. John Meara, the chief plastic surgeon at Boston Children’s Hospital. Meara is a specialist in craniofacial surgeries like the one Dominic needed, as has done three encephalocele surgeries in six years during his time in Boston. Also, because of his proximity to Southeast Asia, where many children are born with clefts and other birth defects, Meara got a lot of practice treating them, but he still said, ‘In the 20 years I’ve been in the specialty, I’ve not seen a case exactly like this.’

 

As Dominic had both a Tessier midline cleft and an encephalocele together, which is an extremely rare occurrence in one person, ‘I’d be lying if I didn’t tell you that I had a number of sleepless nights,’ he said. ‘But I felt comfortable in the sense that we had an excellent team.’ Mary added, ‘I have to say, handing my son off to them [the surgeons] was the most difficult thing I think I’ve ever done in my entire life’.

 

Mary also said that it was hard, in its own way, to know that Dominic’s face would change: ‘As much as his face was different, we fell in love with that face. I don’t know that anyone can really understand that…You mourn the loss of the look and face that you fell in love with because that’s the baby you knew.’ However, she said ‘Now, there’s a new Dominic, and we’re falling in love with him the way he is.’

BabyMedical ConditionReal Life