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A Very Special One-Year-Old and His Mom

One year ago yesterday, a cherished and unusual little person named Kieran was born.

newborn k

His mom, my friend Skye, already knew he would be born with a cleft lip and palate. It was a tough time when she found out about it, because there are a lot of challenges that go with having a cleft – for the child and the parents. And although she is a brave, dedicated, smart, and pragmatic mom, she is also a single one, and she already had a toddler at home.

So she researched the heck out of cleft lip and palate issues, and prepared herself as best she could. She went on lots of forums to read about real people’s experiences. She knew she would need special bottles for him, and a breast pump – because as much as she would have loved to nurse Kieran as she had her first son Grayson, she had found out in her research that the attempts of a cleft-palate baby to breastfeed often actually use up more energy than they provide.

She also knew he would need multiples surgeries, two of them within the first year.

Skye gave birth to Kieran the hard way; she had been given an epidural that came unseated, and you can’t get always get a visit from the anesthesiologist when you need one. (The nurse didn’t figure out the problem until afterwards – and even if she had, she’s not allowed to replace the needle.) I had the privilege of being present for the birth, and I wish I’d had the confidence to go harass somebody about it.

In spite of the severe pain, however, things did go well. Skye was a trouper. Kieran was born healthy and precious, and was immediately cuddled by his smitten mama. Thanks to her thorough preparation, they had everything they needed ready to go.

Skye and Kieran had lots of visits to McMaster Children’s Hospital throughout his first year, with a team of professionals (a plastic surgeon, an ENT doctor, a pediatric dentist, and a developmental pediatrician, to start with) checking on him and getting him ready for his operations. When I would visit them in those newborn days, he wore tape on his lip and a hook in one nostril, to stretch his face gradually to the shape it would take after surgery.

k lip tape

He would drink from his special bottles and burp like a teenage boy. It took him a while to gain weight, but it wasn’t long before he learned to smile and interact, and although he did not look like a typical infant, he was incredibly cute.

favourite

During Cleft Awareness Week (in May), Skye shared these thoughts:

When I first saw pictures of babies with a cleft lip, it was hard to look. Before Kieran came, I didn’t know what to expect with respect to his appearance. But really, who knows what to expect! 

I have since read some things online about parents who are nervous to put their child’s picture online (or even take a picture) or even take their child in public, for fear of reactions. My heart breaks for those parents, and those children. It never crossed my mind to hide Kieran, only to show him off. Looking back, maybe he has helped someone else be more comfortable with some kind of difference, but that is not why I did it. I did it because how could I not? He is (and was) adorable!

I never had one, even slightly, negative reaction to the way Kieran looks. I feel like the world proved its kindness, which I usually believe in anyway.

The first two weeks following the three-month lip surgery would test the mettle of any parent. Suddenly Kieran could not use his soother, had a little cone (“trumpet”) in his nose to shape it, had splints (called “no-nos”) on his arms to prevent him from touching his stitches, and was dealing with painkillers – and a mouth that was whole new shape. As you can imagine, there was a lot of crying and soothing and difficulty sleeping during that time. Skye had wisely pre-arranged for Grayson to spend big chunks of that time with grandparents and friends to ease the situation.

after first surgery

As mentioned, though, Skye is brave and dedicated – and, as you’ve no doubt gathered, really tough. The rest of us were not surprised, but definitely awed, at how graciously she managed – and how she always seems to manage in general, despite how hard things can get.

As Kieran’s face healed, I missed his wide-open smile, but it was amazing to see how suddenly obvious was his resemblance to his brother Grayson.

brothers

The surgery on the palate itself is supposed to happen around the one-year mark for babies with clefts. Thankfully, Kieran got his about seven weeks before that, so they had some recovery time before his birthday, and before September when Skye goes back to work.

For Skye, the two weeks after the second surgery were both harder and easier than the first time: Kieran still had to wear no-nos, could only have pureed food, and was unfortunately adamant about not drinking from a cup (and therefore not drinking at all – stressful for mama!). He was more distractable, but less soothable. She went on lots of walks with him, because it seemed to help.

after second surgery

Since his palate has healed, he has finally learned to suck normally for the first time. It’s frankly amazing what the specialists – and a caring family – can accomplish.

Now, somehow, Kieran is one whole year old. He is very charming and handsome, and very strong-willed (some might say stubborn); he feeds himself enthusiastically, and recently started crawling; he smiles a lot and shows off his three teeth; and he is loved by a whole lot of people. He will probably need help with learning to speak, and he may need more surgeries later in life. He will get to some of his milestones in different ways and at different times from other kids.

He, and his family, are really special and awesome.

From the grit he is already showing, I have a feeling Kieran is going to be just as tough and brave as his mama, so I know they will get through it all together.

family

There’s lots of information on cleft lip and palate at Cleftsmile.org.

A site specifically for moms of babies with cleft lip and palate is Cleftopedia.com.

To donate to surgeries for babies with cleft lip and palate worldwide, please visit Operation Smile.

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