Thomas, Special needs boy placed with Shane and Michelle Frazier by AGCI
On July 13, 2009, we traveled to Addis Ababa, Ethiopia to bring our adopted son, Thomas, home. Although we know that many people have experienced great joy working with AGCI, we feel compelled to also share our story.
My husband and I agreed a long time ago to internationally adopt at least one child, and we felt called to do so this past November, 2008. For a variety of reasons, we felt it was God’s plan for us to adopt through All Gods Children International, Inc.
We completed our home study and dossier in February 2009 and originally were put on the waiting list for a healthy baby girl, age 0-12 months. After talking with our caseworker, we felt moved to expand our parameters to a health baby boy or girl, age 0-12 months. On May 5, 2009, we received Thomas’s referral.
At the time of our referral, we understood that Thomas had some developmental delays that were attributed by AGCI to his story prior to arriving at Hannah’s Hope—normal developmental delays that most internationally adopted children have. He had been relinquished to an orphanage in the south of Ethiopia and essentially had been in a crib for the first several months of his life. Other than those minor delays, AGCI reported Thomas to be normal, both physically and cognitively. The only thing that could have caused any concern was that Thomas does not suck bottles, but, in providing this information, AGCI explained it away such that it didn’t raise any concerns:
Thomas does not suck bottles. We feed him from a cup. He has been at an orphanage that uses only cups not bottles.
After reviewing this information with our family pediatrician and the international adoption clinic, and after asking many questions of AGCI regarding Thomas, we accepted the referral on May 11, 2009.
Between the referral and June 18, 2009, we did not receive any additional information regarding Thomas or a court date. Although we were anxious for news, we had comfort in knowing that our caseworker left for Hannah’s Hope at the end of May for a six-week stay in Addis Ababa and would report any problems or concerns.
On June 18, 2009, we received a phone call from AGCI, congratulating us that we had passed court (on June 11th, we would later find out) and that we should plan to travel on July 3, 2009. This was a surprise because we did not know about a court date prior to the call; we had been waiting patiently to see when it would be scheduled. During this call, AGCI also told us that they had additional information to pass along. Thomas had seen a neurologist on more than one occasion, starting in May (not long after our referral). He also had undergone two brain scans (EEGs) not long after the referral. The EEG reports referenced “global irritation” and, though the EEG was inconclusive, they couldn’t rule out possible seizure disorder. Thomas was prescribed and had been taking phenobarbitol, an anti-convulsant used to treat seizures. One of the reports stated Thomas probably had “perinatal encephalopathy” due to severe asphyxiation as the reason why he had neonatal seizure and psychomotor delay. The physician visits, scans, prescription and diagnosis all were made prior to our court date. One was clearly dated May 28, the other dates were unclear. All were done without our knowledge.
We were shocked and outraged that we had not heard any of this medical information until after our court date. Certainly they have an obligation to inform parents when the medical condition of the child changes materially after referral—and changes to such a degree that the child no longer falls within our approved Home Study parameters. Perinatal encephalopathy indicates brain disease, and seizure disorder obviously has very serious connotations. Our obvious question was, “Has Thomas been having seizures at Hannah’s Hope?” – because certainly presence of seizures would shed a lot of light on the somewhat obscure doctor’s reports we’d just seen. It would also certainly put Thomas in a special needs category, which was beyond our Home Study parameters. AGCI consistently responded with reassurances that Thomas had not had any seizures while at Hannah’s Hope (he had been there approximately 7-8 weeks by this time). AGCI downplayed the doctor visits, brain scans, anti-convulsant and diagnosis of brain disease and repeatedly assured us that Thomas was not special needs and had never had a seizure at Hannah’s Hope. We understood from them that he must have had one seizure sometime after birth, but before arriving at Hannah’s Hope –and none since arriving there. Further, our case worker had been in Addis Ababa for a few weeks already and certainly she would tell us if Thomas was not the healthy child they had referred to us.
We felt confused and shocked. Because Thomas already was legally our son, and because we relied specifically on AGCI’s representations of his good condition and lack of any seizures in their care, we felt as if we had to move forward and bring him home. Further, we were aware that if we backed out of the adoption at this point, Thomas would never be adopted again and we couldn’t adopt another child from Ethiopia. And we had already spent tens of thousands of dollars and had no clear understanding that we’d get it back if we backed out.
Just over one week before travel (and after we had purchased our plane tickets), we received another call from AGCI, asking us to amend our Home Study to include “special needs” as part of our approved parameters. We were floored again – this request signified a clear move into a category that we never intended to be in, nor did we consent to. It also was a category in which AGCI consistently assured us that Thomas was not.
In response to our concerns, AGCI again assured us that Thomas was not considered a special needs child. AGCI said the addendum only was needed because the United States Embassy would see Thomas’s medical information and could deny or delay his visa because the information indicated that Thomas was not within our approved parameters. According to AGCI, this was just a step to avoid bureaucratic delays and did not mean in any way that Thomas had special needs.
Again, because Thomas already was legally ours, we felt as if AGCI left us no choice but to amend our home study so we could get him home as soon as possible. AGCI had repeatedly assured us that Thomas had not had seizures in their care, and we trusted their repeated assurances of his good health. We felt as if we were boxed in – trust AGCI or the whole adoption could fall through. Initially, our home study caseworker did not agree to the proposed addendum because we never discussed special needs, nor had we undergone any special needs training. After discussions with AGCI, our home study caseworker only agreed to amend our parameters to include developmental delays, “minor special needs” and “possible seizure activity.” And this agreement only was made in response to AGCI’s direct and clear statements to our Home Study caseworker that Thomas had never had a seizure at Hannah’s Hope, nor was he considered to be special needs. AGCI specifically said that they “in no way considered Thomas to be special needs.” Without any other choice, we trusted AGCI’s characterization of this amendment as purely a way to avoid possible Embassy delays – not an acknowledgment that our initial parameters had changed. We definitely didn’t want to get hung up in Addis Ababa and have to wait another week or two for the Embassy to complete the paperwork. And we also didn’t want to incur additional flight costs to change our plane tickets.
We travelled to Addis Ababa on July 13, 2009. We were already nervous because of the recent turn of events. When all the families met with Almaz the first morning, she went around and mentioned how wonderfully the children were doing (all of them by name), but failed to mention Thomas----which was very unsettling to us. After that meeting and just before meeting Thomas, Almaz pulled us aside and assured us that he was doing wonderfully and, in response to our question about the seizures, said he had never had a seizure in their care. As she said repeatedly during our stay, she thought we were the “right family” for Thomas. However, within hours of first meeting Thomas, it became very evident that he was not the child that AGCI had consistently described. Although Thomas is now about nine months old, he cannot hold his head up – he is floppy like a two or three month old baby. Thomas cannot suck. We discovered that AGCI had been essentially feeding him by pouring milk down the back of his throat from an open cup. This was shocking to see. Thomas also could not lock eyes. For most of the time, he seemed to be in his own world. He was “present” only minutes of each day.
Additionally, within hours of returning to the hotel with Thomas the first day (after our Embassy visit), he had his first seizure in our presence. It was a visible seizure that involved repeated spasms. We later found out that this type of seizure is known as infantile spasms, where his arms fly up, his legs also jerk up at the same time, and his eyes roll back. This usually continues for 3-10 minutes, with a few or several seconds in between each spasm. This is not something you can’t notice as a seizure. From day one, it has occurred probably three to six times a day and lasts several minutes.
We were in shock. We immediately started tracking Thomas’s every move, calling our doctors back in the States to alert them to this situation and trying to figure out how we got in this position. We told Almaz that Thomas had been having seizures, and she replied that the Special Mothers “keep saying that he does that…” And when Thomas had a seizure at the cultural dinner, in front of the other adoptive families, Almaz did not act surprised or concerned. She did not even get out of her chair and come over to us. She simply said as we were leaving that we are the right family for Thomas and that God is good.
We spent most of our remaining time in Ethiopia in our hotel room, processing what was happening. We felt as if we had been dropped into a situation that we never considered or agreed to. Almaz, on the other hand, refused to acknowledge our situation – we felt like the pink elephant in the room. And just before we left for the airport, three Special Mothers (his night nurses) came to say goodbye to Thomas – only Thomas. They too knew he was “special,” and kept saying “God Bless You.” His spasms generally occur when he is coming out of sleep so they must have seen him suffer and were so happy that he was going to get help. It seemed that everyone at Hannah’s Hope was aware of his condition---but nobody bothered to tell us.
Thomas continued to have seizures and feeding issues throughout our flight home. Although our three biological children were anxiously awaiting our arrival with balloons, signs and cake, we rushed Thomas to our physician within a couple of hours after our 21-hour flight. Our physician recommended immediate hospital admission, and Thomas spent his first week in the States as an inpatient at Children’s Hospital of Wisconsin’s epilepsy unit. He has been diagnosed with infantile spasms resulting from significant brain damage from birth. This is a serious type of infantile epilepsy that is hard to treat and carries a very poor prognosis. Thomas’s brain damage was caused by a severe lack of oxygen (5-10 minutes) during delivery. He also has significant vision issues (near blindness). He has severe special needs and a serious, chronic medical condition. He may never walk or talk – he may never really be “present.” He likely will never go to a regular school, and we’ve been told that he cannot even attend any type of daycare without a personal nurse. Although he has the clusters of spasms probably three to six times a day, most of the rest of the day he is having electrical activity in his brain that causes him to have involuntary reflexes, involuntary laughing/smiling episodes, periods of spaciness. In essence, he is in his own world, which makes it very difficult to bond with him.
How could no one have noticed Thomas’s special needs? Where was our caseworker during this time? Why didn’t we know about the neurological testing and diagnosis prior to our court date? Given the visibility and frequency of Thomas’s seizures, it is impossible to believe they went unnoticed (assuming only three seizures episodes a day, for the approximate 70 days he was at Hannah’s Hope, he would have had 210 seizure episodes that went totally unnoticed!). Given the cause of the seizures (brain damage at birth), it is impossible to believe that they started the very day that they handed him to us in Addis Ababa. And given his significant delays, lack of focus (ability to see) and inability to be “present” for much time each day, along with his treatment as “special” by the Special Mothers and Almaz’s behavior/comments, it is impossible to believe that AGCI did not consider him special needs from the time he arrived at Hannah’s Hope.
Please pray for Thomas as we process this situation, and please consider this information as you examine your own referral and dealings with AGCI. We believe that AGCI unfairly and deliberately placed a child with severe special needs (and a lifetime of very expensive care) into our unprepared family. Now we are caught in an unthinkable situation – and our entire family is heartbroken. Honestly, how could something like this happen? We’re still waiting for an explanation.
Shane and Michelle Frazier