Is That Really All?

July 4, 2016 cleft gumline, cleft lip, Craniofacial, Family Stories, July 2016 Feature - Craniofacial 1 Comments

I remember sitting down – just my husband and I – and looking through the special needs checklist. Although we didn’t check off everything, for young first-time parents, I think that we had a pretty large list of special needs that we would consider.

I envisioned us being matched to a child with a heart condition, unrepaired clubfoot, or possibly unrepaired cleft lip and/or palate. I had been the Fundraising Director at “An Orphan’s Wish” for quite some time and had watched children with these needs come home and flourish under the love of a family and health care in the United States. I knew we could do it!

After finding out we were pregnant with our son – right after our dossier had been sent to China in the fall of 2012 – we decided to put things “on hold” for a bit. We figured that when he was close to two years old we would pick up where we left off, having to only do home study updates until then. It was to our complete shock that in November of 2013 – just seven short months after welcoming our baby boy – our agency called us with a file.

And the file? Totally not what we were expecting… repaired cleft lip and no palate involvement. I think our agency was just as surprised with this file, as they were used to getting the “harder to place” special needs. I mean to be honest, it was a “non-need” in our opinion. She was adorable – round face, chubby little arms and yes a small scar above the right lip… but so small.


We were united with our baby girl just after she turned nineteenth months. That day, the director gave us a few pictures of her before her surgery. The cleft had been tiny… and the scar in person was just as small as in pictures. You really didn’t even notice it.

We did notice a “space” in her upper lip – what would later be diagnosed as a cleft gum line – but that was it. Her lip did not seem to inhibit her in any way. She was a voracious eater – a trait she still holds on to. She pretty much ate her way through our time in Hangzhou and then Guangzhou. She wasn’t speaking, just baby babble, and we added speech consultation to the list of things to do when we got home.


Within a month of her homecoming we had our scheduled appointment with the Craniofacial Clinic at the local Children’s Hospital. Her doctor declared her repair “one of the best I have seen from another country.” He agreed that she did have a cleft gum line, but that for the time being nothing needed to be done, besides yearly follow-ups and the possibility of a bone graft surgery several years down the road.

After getting home the number of words she learned grew quickly, although she had trouble using words in sentences and conversation. She started speech therapy about a year after coming home and since then her conversational language exploded. Although she will continue speech therapy next year, we expect for her to test out of it soon.

All in all her “need” – that being the one listed on her referral – has been the thing we haven’t worried about, the thing we really forget is there.

But she does have other needs that lie below the surface. Needs that aren’t spelled out on referral paperwork and needs that are harder, if impossible, to diagnosis.

Her biggest need was that of a family.

Family was foreign to her and, to be honest, parenting a child with her beginning was foreign to us. We are learning together, and I can honestly say that this past year has seen us all come so far. Her repaired cleft lip was listed on her referral, but what wasn’t listed was her spirit, her smile, her stubbornness and her zest for life.

And in the end those are the things that define our daughter!


– guest post by Ashley: Facebook || Instagram || blog

One response to “Is That Really All?”

  1. Joy Weaver says:

    My daughter had the same special need-cleft lip and cleft gum line-no palate. Her lip was also repaired in China and our plastic surgeon says every year at our cleft visit that it was so well done. He isn’t planning to do a revision until her bone graft. She is almost 9 and hasn’t lost any teeth yet so I am not sure when the bone graft will be. She was adopted at 26 months and has never needed speech therapy.

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