Simply Slim - Part 2: Medical Mishap

Many people mistakenly believe that a baby born with a cleft lip and/or palate will only need one surgery, and then he will be "all better."  But it's really not as simple as that (if only it were!).  As a child grows, so does his face.  Only in a child that has had surgery on his face (or probably anywhere, I'm assuming), the part that was repaired doesn't grow like the rest of the face.  So we knew that Slim was facing a lifetime of facial revisions, rhinoplasties, and implants in addition to his initial repairs.

Slim, left, and Joey, one of their first weeks home from the NICU.
Slim's red cheek is from the tape holding the NG tube.  The knob you
see above his mouth is actually the ridge where his teeth should come in.

After haggling with the medical staff over Slim's extended NICU stay, we finally convinced the doctor we could figure out how to feed him, and they let us take him home.

Medical tests and doctor's appointments began almost immediately.  First was genetic testing.  Neither of us has relatives with the condition.  My doctor surmised that Slim's clefting probably happened as a result of the "twinning" process, but this made no sense to me.  As a cleft is decided before ten weeks gestation, when the fetuses were small, I wasn't sure how that could have happened.  Plus, we did fertility treatments.  This was the first time the thought that God was punishing us for that entered my mind.

Thankfully, the geneticist found no signs of any kind of syndrome in Slim.  Many children's clefts are part of a larger syndrome or a group of symptoms that collectively indicate or characterize a disease.  In other words, it looked as though it was an isolated condition.

So Hubby worked on getting the best doctors he knew and had worked with to begin seeing Slim.  First up was a doctor who would fit Slim with dental appliances to rotate the part of his alveolar ridge (the "knob" under his nose where his teeth should grow in) back and up into his mouth to ready him for his initial lip repair.  These appliances were basically plastic retainers, five of them in all, and I lived in fear that my baby would choke on each one as he slept.

When he began to smile at around 6 weeks, I fell in love with him all over again, and understood the meaning of the "wide smile" that many parents on the support sites said they missed once the repair was complete.

You can not only see his gorgeous blue eyes here, but his darling wide
smile.  If you look really closely, you can see the plastic appliance.

By the time he was nearly five months old, he was ready for his lip repair.  Hubby and I sat in the lobby for what seemed like forever until the head of the anesthesia department came out to talk to us.  Slim was unable to breathe on his own after the surgery and had to be re-intubated.  The anesthesiologist had taped over his nice, fresh lip repair.  The surgery hadn't gone as well as expected, and we were greeted with a shocking post-surgery sight:

The thing on his nose is a bolster dressing used to control bleeding.

We were disappointed, but knew we had to press on.

Shortly after that time was our move to New York.  For the first three months we were there, Hubby was constantly fighting the infection growing at Slim's surgery site. One night after consoling his angrily crying baby, he said, "I'm his father, not his doctor!"  It was hard on both of us.  But regardless, we returned to the Midwest for his palate repair, which went better, if only slightly.

We were fortunate to find a cleft lip and palate parents' group on Long Island and through that met a wonderful surgeon who did nothing but cleft repairs.  At Slim's initial consult, she took one look at him and said, "What happened to him?  Who did that to him?"  I guess that's how we knew we were in the right place.

When he was a little over two, she revised his nose, lip and palate.  She did a marvelous job. When parents of other cleft children see him, they are impressed and want to know the name of his surgeon.

While we were in New York, Slim was also diagnosed with torticollis and low muscle tone, so he received physical therapy twice a week in addition to the twice weekly visits from the speech and feeding therapist.

Slim still learning how to walk at 17 months.





I loved his physical therapist.  She was smart and delightful and had the sense to have him x-rayed to see if anything else was going on in his little body.  That's when we found his syrinx, a fluid-filled cyst in his spinal cavity.  Another medical issue, another surgery.



                                         

But he continued to grow and delight us with his quiet ways, his gorgeous smile, and his sometimes-quirky behavior.

Simply Slim - Part 3 coming soon...

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