Adoption: 13q Deletion Syndrome

Adoption: 13q Deletion Syndrome
“They say we could go into her room any time and find her dead.”
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I knew it was coming, so it was really no surprise when our family got offered a baby girl as another foster child. 

My husband, Roger, and our three daughters had been a foster family for several years, and I seemed to always have a sense when another child was in the offing.  This time, I had been having that strange, “baby-feel” as if there was a baby in my arms.  Odd as it sounds, I could almost smell that fresh, baby scent around me.

This time, it was another foster mother who called me, saying that they had a six-month-old little girl that was scaring them to death.

“They say we could go into her room any time and find her dead,” Molly told me.  “Our nine-year-old is really having a hard time.  She’s having nightmares about it.  Do you think you would be interested in this baby?”

Of course, going out to visit them was strictly a formality.  When there was a baby that needed a home, I knew that once the girls and I clapped eyes on it, if it had two heads and a tail, we would immediately begin cooing and saying how cute it was.  This baby, however, could have been a stretch even for us to say that she was cute. 

I suppose I should qualify that.  Jessi was cute in a way.  She was born with a rare chromosome abnormality called 13q deletion syndrome.  She had been neglected, her mother was very young…very young…and her parentage was murky, which, from what the doctors told us later, explained her condition.  I held her that first day and felt the fulfillment of the phantom weight I had been feeling in my arms and wondered if this was actually the baby I had been anticipating.

13q deletion syndrome actually means simply that half of the 13th chromosome is missing.  It is an extremely rare abnormality, but one that the doctors had suspected immediately after Jessi was born.  She had an odd, enlarged look to her head, tapering to an extremely small chin.  Her face had an odd mashed look, her eyes bulged slightly, her ears tipped out at the edges.  Her fingers were missing a joint or two, her tiny toes were misshapen.  She seemed both blind and deaf.  They were having an extremely difficult time with feeding as most of the formula came out her nose.  Her pale skin seemed almost translucent, and the few wisps of hair she had were the same non-color.  She looked altogether a lot like Yoda.

We took her home as soon as DFCS could transfer her custody from one foster home to ours. Of course.

As a foster family, we had specialized in special needs kids almost from the first.  We already had a little foster son who had a kaleidoscope of birth defects, so Jessi seemed to fit right in.  She was like a living baby doll, for she never seemed to mind where she was or who was holding her.  She would stare up into space, sometimes smiling fleetingly, her milky-blue eyes with the pin-point pupils never focusing on any face.  Her funny, silky-soft hands would clasp together as she stared. 

Our pediatrician was fascinated by her.  If he had a resident in training observing at the office and we had an appointment, he would make a point of asking the young doctor if they knew what 13q deletion syndrome was.

“Don’t worry about remembering the name,” Dr. W. would say.  “You’ll never see another child like her.”

Jessi would allow herself to be examined with the same serene dignity.

There was still the question of her life-span.  As DFCS worked with her family, and as her very young mother had another child and then another, both perfectly normal, Jessi began to experience health problems. 

At first, it was believed that she had a hole in her palate.  This was discovered to be unfounded, but it was still an ordeal to get her to take more than a few ounces of formula at a time.  She was very tiny.  When we got her, at the age of six months, she weighed about 8 pounds.  She began to get frequent ear infections.  Somehow, it seemed that there was a backwash of anything she drank that was causing bacteria.  Although everyone was afraid to put her under anesthesia, Jessi had tubes put in her ears and sailed right through.

With her ears cleared up, she began to have bad reflux.  She gagged on any solid food, even the most pureed.  Her esophagus was becoming inflamed.  She would cry sometimes, and we knew by now that if Jessi cried, something was really hurting.  At last, the procedure to place a permanent feeding button into her stomach was performed.  I was the one crying then, feeling as if I had failed her.  Jessi didn’t mind it at all.  She put on weight and began to get plump.

Developmentally, Jessi continued to be a baby.  She showed no sign of reaching any developmental milestones to speak of, until one day, when we were watching the Braves play on TV, she suddenly sat up on her quilt on the floor.  She had been in physical therapy since her health stabilized, of course, but had showed no improvement.  After that, she sat with no trouble.  After a time, she began to hitch herself along on her bottom, or to roll, or to pull the covers up.

But, she always wore diapers.  She never cooed or babbled.  She never startled at loud noises, but she would turn her head if called by her name or if music was played.  Her pupils never reacted to light or dark, she never tracked with her eyes, but she would reach toward one of us once in a blue moon as if she knew we were there.  Tests showed that she had brain stem activity, but not much else.

Jessi began to look less strange.  She had curly, brown hair with a streak of blond.  Her eyes didn’t protrude as much and were sky blue.  She would chuckle at nothing sometimes with a throaty, infectious laugh.  We said she was smiling at the angels.

Time went by.  Years went by.  Reunification with her mother was attempted, overnight visits were set up.  Jessi came home with filthy clothes, eye-infections, then bruises.  At length, her mother quit showing up at the meeting place to take her to her house.  Finally, the attempt petered out.  We agreed to keep Jessi as a permanent foster child.  Her caseworker privately told us that she was classed as “unadoptable”.

When Jessi was about ten years old, much older than she was supposed to have lived, suddenly the system seemed to realize that she had been in foster care for a decade.  Children growing up in foster care were becoming a thing of the past, and we were approached with an ultimatum: adopt or let someone else adopt, if a parent could be found.

By this time, our own daughters were nearly grown.  We had adopted the one little boy who was Jessi’s sidekick in all things, right down to school and sitting in their wheelchairs on the porch together.  Jessi and Timmy were inseparable.  We had had both nearly all their lives.  But Timmy was also deemed a terminal case, with a heart condition so bad that only a transplant would repair it, but with neurological problems so severe, an operation would kill him.  Could we, in all good conscience, take on another child so precarious? 

Our daughters were in their teens.  There were three terrible possibilities to consider.  What if Jessi died?  Could we put our children through the ordeal of seeing their little sister who they had toted around as youngsters, bathed and strolled and dressed up like a baby doll, decline in health and then pass away?  Could we, however, do the other option and send her off never to know what happened to her?  Then there was the last possibility.  What if Jessi didn’t die?  As hard-hearted as it seemed, what would happen to her if she continued to live and grow bigger as Roger and I grew older?  It would fall to our daughters to care for Timmy if anything happened to us.  Was it fair to assign another lifelong responsibility to them?

“Are there really any people who would adopt her?” we asked her caseworker.  By this time, we had gone through half a dozen caseworkers, but we had liked them all. 

“There are a couple of families out west,” she told us.  “They have adopted a lot of special needs kids.  If we go national, we may be able to place her.”

We grilled our pediatrician again about her health.  “Her prognosis is still crappy, you know,” Dr. W. replied.  “She’s got scoliosis of the spine which will probably get a lot worse as she gets toward adulthood.  She weighs about forty pounds now.  She’ll never walk.  She’s a weight to lift.  She could get pneumonia any time and go.  It’s not good.”

We prayed.  We talked to our girls.  They didn’t want her to go.

We watched her with Timmy, who, despite his disabilities, was much more aware than Jessi.  In school together, their teacher said that if Jessi was on the play mat for floor time, she would hitch herself to where the wheelchairs of the other kids were lined up, feel from one to the other until she found Timmy’s and then sit beside it, reaching up to touch him.

At last Roger said:  “She has a right to have a family and a last name of that family.  A family who is really hers, even if she never realizes who they are.”

We called DFCS and told them we had made a decision.  By the end of the year, Jessi was adopted.  By us. 

Her mother, who had remained elusive for years, was found by the county and, at the hearing to sever parental rights, she asked if she could keep a picture of Jessi.  She was relieved that we were the ones who would have her forever, she said.  She didn’t ask to see her in person.

Jessi is twenty years old now.  She still wears diapers, has short, curly brown hair and sometimes reaches for us.  She still smiles at the angels.  She was on the floor on the play mat with Timmy, listening to Tim’s favorite Gospel Bluegrass video when Timmy died beside her at home.  She was his compadre to the end.

She is Auntie Jessi now to our six grandchildren.  Although she is a hefty weight, and we’re not getting any younger, I have discovered that if you lift something several times a day for years, you somehow can keep lifting it.  We don’t know what the future holds, but Jessi is our daughter and she’ll be in it as long as we’re around.

She was our daughter when she was just that “baby feeling” in my arms.  Who were we kidding?

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