Eyes Wide Open: Part Three

June 30th, 2011

Physical and Medical

We received Katerina’s medical file back in January.  Doctor Strauss, Verity’s doctor at the Clinic for Special Children, reviewed her file shortly afterward, and observed her photos and video.

Ever since we learned how tiny, malnourished and delayed she was, I have been on a quest to find all the missing puzzle pieces that would give us a picture of why and how she got to where she is now.

Even before that, way back when we first saw the video clip that cut into our hearts, one of the first things we learned was that children who are living under conditions of severe deprivation simply stop growing, even if they are receiving some food.  They stop producing the human growth hormone.  If we hadn’t known that fact, we may have been more baffled by her tiny size, shocking as it is.

We have all seen heartbreaking pictures of starving children in Africa clinging to their equally starving mothers.  In those cases, the children are receiving little to no food, but they are receiving affection and touch from the one person they are closely bonded to.  This nutritional deprivation causes sparse, orange hair, bloated belly, and stick-thin arms and legs.

In the average Eastern European orphanage, even when some food is available, when the child is deprived of affection, touch, sensory input, interaction, and most importantly, bonding to one caregiver, it is unusual to see the classic signs of starvation, but the growth patterns of the children are always affected to some extent.  If this occurs during the child’s first three years of life, the damage it causes is irreversible.

We have learned that although this emotional and sensory deprivation is damaging to every human being who experiences it, some children are more sensitive to it than others.  Some are stolid and take things more in stride, and some are sensitive and wither on the vine.  We can see both types among our ten children; in fact, our twins are opposite types.

If a institutionalized child with Down syndrome grows and makes developmental gains fairly well on her own, she will be put in with the other children who are growing and mobile.  It is unusual for Eastern European orphanages to provide needed therapy.  If a child does not show developmental gains on her own, she will be put into what has come to be known as a “lying room,” where her opportunities to develop are limited even further.  At this point, we know that Katie can sit, albeit with very poor form, including poor head control.  We don’t know whether she is able to roll over either way, and it is unlikely that she can pull herself up into a sitting position.  What Katie knows is what Katie has been able to learn on her own.

We learned with Verity that while some children with Down syndrome don’t have any feeding issues, some can have feeding issues ranging from mild to severe.  The reality is that if someone hadn’t spent the greater part of Verity’s first year teaching her to eat, she would probably be barely alive, if she had survived at all.  She only wanted a tiny fraction of what she needed, and wasn’t strong and coordinated enough to get it quickly.  And the learning process is ongoing for her as her diet expands.  Some children, like my friend’s little Anya, had never learned to swallow, and have needed therapy to address this problem once they are brought home.  How much time do you suppose has been spent teaching Katerina to eat?

We have learned that her diet is almost certainly imbalanced and lacking in many essential nutrients, and only barely contains what she needs to maintain, but not to grow.  Underfunded orphanage staff often have to resort to putting together whatever food they have on hand.  Sometimes the formula is watered down to make it stretch.  Some children have gained weight on this insufficient diet, but have been found to be malnourished due to the lack of necessary nutrients.  Some children adopted in an extremely malnourished state have been at risk for refeeding syndrome and needed hospitalization to save their lives, like little Carrington who was brought home this past March.

Children with Down syndrome can have weak immune systems and are prone to recurring upper respiratory, ear, and other infections.  We have learned from reading her file that Katie has had some of these to deal with.  In addition, all her life she has been put flat on her back to drink a bottle, and we would not be surprised to learn that she has some hearing loss as a result of chronic fluid in her ears.  Children with Down syndrome commonly have various sensory aversions under the best of circumstances.  Lying in a bed with very little stimulation of any kind would only exacerbate these tendencies.  All these issues–sickness, hearing loss, and sensory issues–without proper intervention, have almost certainly compromised Katie’s ability to focus, learn, progress, and grow.

We are aware that Katerina could possibly be anemic, have parasites, be gluten-intolerant, or any number of other common causes of growth difficulties.  She will be tested for all these conditions, as well as for many, many other conditions, as soon as possible after we bring her home.

We plan to take her to the closest international adoption clinic for an initial evaluation and recommendations by their specialists.  After that visit, those doctors are available for consultation to our doctors at the Clinic for Special Children, who will be in charge of her ongoing care.

Our doctors at the CSC can do all necessary bloodwork for a lower cost.  They have an on-site, state-of-the-art lab.  They can help us determine Katie’s precise nutritional needs.  They provide free hearing tests and free consultations with a pediatric cardiologist, low-cost doctor visits, and very inexpensive echocardiograms.  They have established relationships with the best area specialists for issues common to children with special needs.  We are only ten minutes from the CSC, we have an excellent working relationship with them, and they have been extremely supportive of this adoption.  Could God possibly have set up a more ideal situation for Katerina’s medical needs?

Katerina does not have any known need for surgery or other extensive medical intervention, but she is obviously in serious need of love, proper nutrition, and basic medical and dental attention.  Of course there is always the possibility that she may have medical issues that are only revealed to us after we get her home.  Just as with a biological child, there are no guarantees.  We know there is no reason to fear this unknown factor, because God knows all about it!  He will be there with His provision and His grace!

[Coming up:  Part Four, or Emotional/Behavioral]

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2 Responses to “Eyes Wide Open: Part Three”

  1. Stephanie says:

    “Just as with a biological child, there are no guarantees.  We know there is no reason to fear this unknown factor, because God knows all about it!  He will be there with His provision and grace!”

    You said exactly what has been on my heart as so many question our desire to be open to children with special needs during our own adoption journey.  Health is NOT a guarantee, folks! And as a mother of three biological children, two with known health complications, it hits closer to home for me. 

  2. Thank you for sharing…  Just so you know i check out your blog just about every day, you are encouraging to me and I love to read how the Lord is working in bring Katrina home.  It will be interesting to see her when she is home and the changes that will happen to her with alll the loving care and affection she will be receiving.
    May the Lord bless you!

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