Just...Wrong

Today I received a letter from the geneticist who saw Avery.  (This is not the letter in its entirety, it is very long)

“She is a 6 month old Caucasian female infant who was admitted at 6 months of age urgently for failure to thrive.  X-rays were done to determine whether or not there was any cardiomegaly and rib fractures of seven and eight were seen on x-ray, as well as a healing fracture of the right clavicle.  The rib fractures are on the left.  Parathormone, vitamin D and alkaline phosphatase were all normal.  The skeletal survey was done, which I reviewed.  The cortices of the bones looked to be within normal limits.  X-rays have been reviewed previously by a pediatric radiologist in Minnesota with no comment other than the fractures.  Vertebrae were biconvex.  Ribs appear to have normal ossification.  The right clavicle showed periosseous ossification.  The question was raised as to whether or not the child may have osteogenesis imperfect.  Resident reported that the sclera were white.  No disproportional characteristics.  Ophthamology had seen the patient and found no ophthalmologic abnormalities.  The MRI of the brain was normal.  I examined Avery briefly by looked at her sclerae and looking at her generally, without a complete exam.  In regular light by the window, her sclerae appeared to be greyish-bluish in tint.  Compared to the mother’s eyes whose sclera were white, Avery’s were definitely a greyish-blue color.  The resident as well as the OT who were in the room agreed that the sclerae appeared to be greyish-bluish in tint. 
Therefore, blue sclerae, short stature and 3 fractures in different states of recalcification suggests osteogenesis imperfecta, most likely type I, since this is the mild form. 

Avery’s paternal great grandmother had “brittle bones” with fractures.  It was elected to have Avery and her parents referred in for a clinical genetics visit after having gathered all of the family history and a pedigree.  With regard to Avery, it appears as if she has OI, at least from the clinical manifestations. “

However, when I called to tell the Social worker of the letter –  I was also told that the state is pursuing custody of Madilynn and Kailee, as well (despite a full set of skeletal x-rays and a complete physical that showed excellent health for both girls and nothing unusual on their x-rays).  Our shelter care hearing is tomorrow morning and we will have to make a case for keeping Avery, Madi and Kailee in our home.

If we can’t keep custody of all three children, we will move out of our house and have my amazing sister take care of Madi and Kailee for the time being.  However, because of Avery’s unique and complex medical needs – we don’t know if my sister would be able to handle all three of our children alone.  It is a tough job, even for the most experienced mother’s.   If she we aren’t able to stay in our own home with our children, we will have to release Avery to foster care in hopes that she can get the best medical care possible in a medical foster home.  This is absolutely heart-breaking, terrifying and just…wrong. 

I am praying with all my might that the judge tomorrow will seen reason and understand that with the geneticists letter it is obvious that our family did not hurt Avery, rather that her bones are predispositioned to fractures because of Osteogenesis Imperfecta.