No matchy-matchy Part 2

Standard

Today as I was driving South on I-95 I got the call that officially wraps up Gabriel’s American Re-diagnosing. I did a similar post for Jude, here is how Gabriel’s medical chart played out:

When Referred from Bulgaria:

Premature Birth

Retinopathy of Prematurity stage 3-4

Anemia, resolved

Asthma, resolved

Allergic atopic dermatitis, allergen not identified, resolved

Unspecified abnormality of the 9th chromosome

Mild-Moderate global developmental delays

“Moodiness.” and Extreme Tantrums/behavior

Hemangioma

Disturbed sleep/changes in EEG

In the USA:

Premature Birth

Retinopathy of Prematurity stage 0 (in USA once someone calls it, you don’t loose the diagnosis, but essentially the ophthalmologist can’t find what they were talking about)

Astigmatism

Nearsightedness

Moderate Intermittent Asthma

Atopic Dermatitis

“absence of heterozygosity” (I’m not getting into this explanation too deep. I have been warned and others should be too that this isn’t really that uncommon when adopting from Bulgaria. Google if you want more information)

Specified delays in speech, gross motor, and fine motor skills

Fetal Alcohol Spectrum Disorder/syndrome (Genetics will decide which end of the spectrum next year once she is settled)

Adjustment disorder/Conduct disorder

Hemiangioma

Microcephaly

Failure to Thrive (note: this is improving now)

As with Jude, I am very happy the child just described above what not presented to me in a written report. Gabriel’s diagnoses look frightening and at least one is on the original list of special needs that I said “no” too. Only with her would this myriad of intimidating medical diagnoses be remotely possible. Why? Because Gabriel is also incredibly intelligent. I really do feel that she has the potential to thrive as a fully independent adult in the future.

I have thought long and hard about making Gabriel’s list of medical diagnoses available in a public setting. I really do feel that anyone adopting from Bulgaria ought to know what they may be up against. Regarding Gabriel’s genetics results the wording “unknown father” was used in her referral. I am now being told that might be a polite euphemism.

The FASD/Microcephaly/Adjustment-Conduct disorder is one that is literally written on her face. I entertained the possibility of FASD after committing to Gabriel and seeing her photo on the internet around Christmas of 2014. We were quite certain of Gabriel’s declining mental health following out first visit to Bulgaria. Microcephaly is already visually very obvious when her hair is wet. This one diagnosis caught me by surprise when we came home with her.

When I met Gabriel in June she was 29.5 inches tall and weighed 17 pounds. She was 2.5. Gabriel is 33 inches now and 25 pounds. She is still well below the growth chart for her age. The important thing is that she is growing (just slowly).

Let me spell out my direct warning to potential adoptive parents:

  1. Be prepared for any and all prenatal care and birthparentsocial histories. Chances are good that you have a child who is involved with that.
  2. Bulgaria doesn’t recognize Fetal Alcohol Syndrome as a diagnosis.
  3. Bulgarian medical specialist may have a vastly inaccurate, different, or be just plain wrong and have the wrong diagnosis assigned to children.
  4. You won’t get all the medical records.

Above everything else, just be a parent to your child. The adoption books are good, but they have huge gaping holes of information missing from them (ahem…Purvis). Whatever your particular favorite is in the beginning, I promise it will be flawed by the end. Behind the file, the referral, the photo, across the sea is a very little amazing person; who, after upsetting all your cats, peeing on all your stuff and demanding the last oreo at 2AM, you’ll come to adore as your family.

 

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2 responses »

  1. Thank you for your honesty. It’s not often the APs step forward and share such details, especially in terms of comparing referral information to diagnoses set once at home. I am always happy for the families whose children are healthier and doing better than expected and those are the stories you hear a lot, but, like you, I feel like everyone should be prepared for another possible outcome, too.

  2. Well I did not adopt my daughter for her diagnosis just for who she is. FYI we have many of the same diagnosis from Russia w her.

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