In honor of November being National Adoption Awareness Month, Portrait of an Adoption is hosting the fourth annual acclaimed series, 30 Adoption Portraits in 30 Days.  Designed to give a voice to the many different perspectives of adoption, this series will feature guest posts by people with widely varying experiences. 

By Julie Cowan

My husband and I got married in our late thirties. Before getting married, we had actually talked about adoption if we couldn’t have bio kids. We were both on board, we just wanted to be parents. After a quick diagnosis of infertility, we started pursuing adoption. Open adoption appealed to us. What we read indicated it was really good for all members of the adoption triad, but especially good for the child, who would be our first priority.

We worked with a well-known northwest agency for our home study. We were open to adopting widely diverse children, but felt that we weren’t best able to adopt a child with special needs. Two weeks after turning in all our paperwork, to our surprise, we were chosen by a birthmother.

We were told by the agency that she was late to receive prenatal care, but that she had “a normal ultrasound”. That was important to us. We realize there are no guarantees in life, but a structurally typical ultrasound would be a good start.

We moved into high gear gathering baby supplies. The day before we were supposed to meet “K”, she went into labor. She delivered the baby boy in a small town, in a small hospital. The medical records department was closed, as it was a Sunday, so we left the hospital with birth records indicating a normal delivery.  Our beautiful son Kyle appeared typical at birth.

We did receive more records in the mail about two weeks later, again with a prenatal note indicating there was a “normal ultrasound”. We were happy and busy loving and caring for Kyle when, at two-and-a-half months old, his left eye started turning inwards. Okay, lazy eye, we thought, and we took him to our pediatrician. She referred us to a pediatric ophthalmologist. The doctor just wanted to see us back to watch it and talked in the future (at six months) of possibly doing an MRI.

At five months old, there was no change in Kyle, and we now worried that his vision issues were causing milestone delays. We took him in to see the top pediatric ophthalmologist at Children’s Hospital. He examined Kyle, talked about him reading in school in a few years, and said he didn’t think he needed an MRI.

At six months old, we asked a substitute pediatrician (ours was on leave having just adopted from Guatemala), for a referral for physical therapy and occupational therapy. Kyle was experiencing ongoing delays such as barely rolling over and not reaching for things. The doctor said Kyle was being stimulated enough, but he gave in and wrote the referral.

Along with the delays, Kyle became increasingly fussy and had big problems with constipation. Friends and even my mom said, “all kids develop at different at different rates, don’t worry!”

But I was falling apart. My maternal instinct told me something was wrong, and nobody would validate it. For the first time in my life, I saw a counselor and went on an anti depressant. A month later, we finally got into see a physical therapist. At the second visit, she said “you should make an appointment with a neurologist.”

Before that appointment could even be made, Kyle started projectile vomiting one weekend. After multiple phone calls and a visit to the doctor all within a forty-eight hour period, I took Kyle in to the pediatrician again. The soft spot on his infant head felt hard, and I said that if he were my patient, I would want to do a scan.

I felt overwhelming relief as the doctor agreed and sent us to Children’s Hospital. (Still, the referral said “stomach flu”). I knew someone would finally figure out what was going on!

Within an hour in the ER, we were told that most of the left side of Kyle’s brain was missing. It was an out-of-body experience. We were devastated. How could that be? The birth mother had had a normal ultrasound, and it was in the records.

We called the agency, but they told us we had to pursue getting any further records on our own. Our son was in the ICU, and they told us they couldn’t help us. Kyle ended up having a VP shunt placed in his head (his first of five shunts now). A month after we got home from the hospital, his seizures started. Infantile spasms. Not a good intellectual prognosis. Another devastating blow.

At one point he was having multiple seizures a day, and one lasted for forty minutes. Then, like a light switch, the medicine worked and the seizures shut off. He was seizure-free for a year, and now he has small absence seizures, but only when his medication needs to be increased.

It turns out that the agency got its info about “a normal ultrasound” from “someone” at the doctor’s office over the phone, and the doctor realized as he reviewed his note about the normal ultrasound that he never saw it and needed to correct his note, but he never did. Turns out “K” did have an ultrasound, but it was “for dates only” not a “diagnostic ultrasound”. Who knows, maybe all this would have come out if we’d gotten to meet her first.

A few months later, an older acquaintance who years ago had a special needs son, told us we should talk to her other son, who was an attorney, to see if anyone could help us. It turns out her son was the ONLY attorney in Washington who practiced “wrongful adoption”.

My husband was so reluctant to start the process; he thought it would mean or send a message that we didn’t love Kyle. I felt strongly about doing it BECAUSE we loved Kyle. Who and how would he be taken care of if something happened to us? I cried at night thinking about it. The agency had a duty to give accurate information to people.

After two and a half years, we settled the suit out of court.  It was interesting how an agency will do a thorough home study and say you are great people who are worthy of being parents, but then that same agency tries to tear you down in legal depositions.

The settlement was not a windfall; most of the money is put in a trust for Kyle, with some left to pay for things insurance won’t pay for. My husband and I continue to both work and save money in case he outlives us.

Kyle is twelve now. He has left porencephaly, right schizencephaly, seizure disorder, and cerebral palsy. He is in a wheelchair and uses a Dynavox for communication.

He is also handsome, funny, loves Nascar, the Seahawks, and he adores his sister Hayley. Although it is physically challenging to take care of him, we also get a lot of joy from him and have learned so much about compassion and seeing value in people beyond their abilities. We also have met phenomenal other special needs families. Other parents who “get it”!

Cognitively, Kyle doesn’t understand what adoption is. “K”, his birth mom, has chosen not to see him since he was one. She kept his birth a secret, because she had teenage children that she was estranged from at that time. She has since reunited with her older children. We still send letters and pictures to “K” twice a year, and it feels odd never hearing anything in return.

Yes, we adopted again, a little girl named Hayley. Hayley’s adoption is very open; we feel like we’ve been blessed with a whole other family! People say that when a family has a child with a disability, most go on to have a subsequent child, so that life isn’t all about disability. They are right. My husband was very nervous, asking, “what if lightening strikes twice?” In a way, it did, but that’s another story, maybe for another year.

Julie Cowan lives in Seattle with her husband and kids. She works as a nurse and is a proud mom to Kyle, age 12, and Hayley age 9.

This year’s Adoption Portraits series is filled.  You may send a submission for next year’s series to Carrie Goldman at  Follow Portrait of an Adoption on Twitter and Facebook.

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Check out Carrie Goldman’s award-winning book Bullied: What Every Parent, Teacher, and Kid Needs to Know About Ending the Cycle of Fear