Cam’s entry into our family was not as abrupt as Ty’s because of the severity of his special needs. But just like with Ty, I remember it all so clearly. We were in the process of moving out of our condo and into a house and I was at the new house painting the master bedroom when the phone rang. The placement worker didn’t have many details but she knew they had a newborn in the NICU who had some special needs and would be discharged into foster care. She requested that we come to the NICU for a meeting for further information if we were interested in the placement.
I admit that I was hesitant at first, not knowing how severe the baby’s medical needs were going to be but I couldn’t just say no after she told me that there were no other homes that could take him in our county. If we turned down the placement, he would be placed 3 hours away in a pediatric facility. That hurt my heart so I agreed to the meeting with the understanding that we would need a lot more information before making a decision. At the meeting we were told that they had a 2 week old baby boy who had just been diagnosed with Prader Willi Syndrome.
Prader Willi Syndrome (PWS) typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is circa 70, but even those with normal IQs almost all have cognitive deficits and require special education. Social and motor deficits also exist. At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia (“failure to thrive”). The second stage (“thriving too well”), with onset between the ages of two and five throughout lifetime, usually is characterized by increased appetite, weight control issues, and motor development delays along with often severe behavior problems and medical issues.
He had just undergone surgery to have a gastrostomy tube placed because he was too weak to suck from a bottle and he was very small even though he had been born full term. We were given a whole packet of information about Prader Willi and what to expect for the first year. Cam’s biological mother was present at the meeting and was very sweet. She had 2 other children who were in foster care but were at the final stages of reunification. The original plan had been for Cam to be released into her care and start the older children transitioning back home. Unfortunately that plan was scrapped once the extent of Cam’s special needs was discovered. His mother, sweet as she was, also happened to be on the lower end of the functional IQ scale. She was not able to understand his syndrome or how to care for him.
Cam rarely woke up at all, sleeping up to 23 hours a day sometimes, and he had to be fed through his g-tube every 3 hours round the clock. His mother expressed her own concerns about her ability to care for him and agreed to temporary custody being given to the state while she learned how to care for him. We expected that Cam’s case would end in reunification once his medical needs were stabilized. That was what everyone expected.
We were given the chance to see Cam in the NICU through the window and he was so tiny and he looked like a cute little alien baby. I knew right then that we would be accepting the placement. No way was I going to be able to let this baby go to a pediatric facility where his mother would only be able to see him every 4 weeks. We had 2 weeks to prepare before his release date and it was a whirlwind of education and specialists and paperwork. I spent 2 hours every day in the NICU room with Cam and his mother, we got to know each other very well. She was such a nice person and I really enjoyed getting to know her better. I had some concerns about her ability to parent a special needs child but figured we had time before we had to worry about it.
|The day we brought Cam home|
We brought Cam home from the NICU when he was exactly 4 weeks old. He was an incredibly easy baby as he never cried, he didn’t demand anything- the very things that put him at risk in his mom’s home made him very easy to care for in my home. He literally slept 23 hours a day and I tube fed him every 3 hours. I supervised visits with his mother twice a week and he got to visit with his older siblings every other week. The next few months were a whirlwind of doctor’s appointments, therapy appointments, specialists appointments thrown on top of the other stuff that comes along with caring for a child in the foster care system.
What started out as simply Prader Willi Syndrome, and I say that with tongue in cheek because there is nothing simple about PWS, evolved into a slew of other medical issues. Severe reflux cause sleep apnea which led to a surgical intervention, a Nissen Fundoplication. Cam had a bad reaction to the anesthesia which led to him being on a ventilator for 2 weeks. Then, as we were getting ready to plan his discharge, he got an infection. It was scary how fast he went downhill. He was fine in the morning, I left to go run some errands and got a call about an hour later that I needed to come back immediately. He had been transferred to PICU because they were concerned he had an infection. Prader Willi children do not typically run fevers and they have an almost impossibly high pain tolerance, both of which make it incredibly hard to know when they are really ill. That began our 9 week stay in the PICU that included 2 additional surgeries and quite a few unexpected complications. Two steps forward, three steps back. It was incredibly frustrating and disheartening. We had other children at home, we had 2 full time jobs, we were struggling.
When Cam finally came home we were anxious to get back to normal. He had only been home for 2 weeks when the seizures started. At first, I wasn’t sure what was happening because his symptoms were unlike those of any seizures I was familiar with. He would start with a small twitch in his left eye that would move down his face to his mouth. His eyes would roll back and he would stop breathing. Most people who experience seizures will spontaneously resume breathing once the seizure ends. Cam did not. He required CPR rescue breathing after every seizure. He had to go back on the apnea monitor. It took 3 pediatric neurologists before he was finally properly diagnosed with an uncommon seizure disorder. One more medication to add to the daily regimen. It took us 14 months to get his seizures under control to the point where we didn’t live in daily fear that he would die.
This is just the tip of the iceberg of Cam’s medical needs. He required many surgeries over the years. He was g-tube dependent long after he was able to eat by mouth because he suffered from tracheolyringomalacia. Removing the g-tube was an ordeal in itself. What should have been a simple, outpatient procedure turned into a 2 month nightmare. Two days after the outpatient procedure to remove the g-button and stitch the tract closed, it split open. Literally split open, spilling the contents of his stomach all over the floor. I was in labor with Maia at the time and Cam was with my mom. He was rushed into emergency surgery and they stitched it closed once again. Four days later, the tract opened again. This time, he required major abdominal and stomach reconstructive surgery. They actually took his stomach out of his body, removed a part of it, sewed it closed and put it back inside his abdomen. They used muscle and tissue to close fill in the original tract and told us to pray. I was still hospitalized recovering from a blood clot after delivering Maia so poor Matt was rotating between my room and Cam’s room. We lived in fear for weeks that it would split open again. But it didn’t. Finally, he could eat and drink by mouth, he could wear cute short and t-shirts without the fear of getting the button caught on something. I didn’t have to worry about him opening the button or pulling it out. Progress.
When we were first approached about adopting Cam (when he was 17 months old), we were hesitant. I won’t lie about it. I had missed most of Ty’s third year of life due to extended hospital stays, surgeries and unexpected hurdles. Cam’s mother had long since realized that she could not care for him properly and was willing to relinquish her rights but only to us. If we were not willing to adopt him then she was not willing to relinquish. Nothing like a little bit of pressure to help you make a decision that will change the rest of your life. By this point, Cam had been a integral part of our family for 16 months. But those 16 months had been fraught with uncertainty, stress, and fear. We asked the social worker to pursue other adoptive placements for Cam while they prepared for a TPR trial. We were not sure we were ready to adopt a child with these needs, who would also require life long care.
Cam’s geneticist put us in touch with the Prader Willi clinic in our state where we were able to get a lot of information and support. We were assured that Cam would live a relatively normal, if restricted, life. He would require constant supervision around food and probably some special educational modifications but it was highly unlikely that his previous level of medical care would continue. The department searched, and I say that with sarcasm, for 3 months for an adoptive family for Cam. They determined that if we were unwilling or unable to adopt him, Cam would be placed in a pediatric facility long term. At 20 months of age, they would place him in a facility. There was no way that we were going to let that happen.
Still harboring some uncertainty that we doing the right thing, we signed the intent to adopt papers. I still feel anger to this day at the pressure the department applied to us. We were backed into a corner and given an ultimatum. I hate that. It’s not that we don’t love Cam, we do. That was never the question or in doubt. But with his sweet smile, big kisses and belly laughs comes huge responsibilities. We were stuck between a rock and a hard place. We loved him and couldn’t bear the thought of him being in a facility but we also knew that his disabilities were extensive already and realistically it could be years before we saw the full extent of his disabilities. We knew we were making a life altering decision, not just for us and for Cam but for Ty and any future children. Cam would need lifelong care. I wouldn’t change the fact that we adopted him. But I am still a tiny bit bitter at being coerced into it and I imagine that I always will be. He deserved to be adopted into the very best family that fit his needs. His interests would have been best served by being an only child. The system failed him despite how very much we love and adore him. His needs should have come first.
We finalized Cam’s adoption on June 26, 2004. He was 21 months old and had been in the system for 20 months.
You can read some more thoughts on our reality of special needs parenting here: