I say this because it’s true – Little Miss Adorable is living proof of the importance of active living in the community.
At this point in Little Miss Adorable’s life she has ‘guest lectured’ to classes of Special Education teachers five or six times; ‘spoken’ at municipal council two or three times; been on TV and in local newspapers a handful of times.
Not only does she get out, she’s starting her own lecture circuit.
Joking aside, Little Miss Adorable epitomises the power of ‘getting out.’ In her early days, we had to fight to get her out of the hospital.
The quick version of the Little Miss Adorable story is this: she was born on a Wednesday, pink, plump and perfect; she was a sleepy, floppy baby who did not feed; and by Friday noon she was dehydrated and admitted to the NICU. She was then subjected to countless tests and nurses inserted a naso-gastric tube for feeding. On Monday morning the Chief of Genetics was involved, on Tuesday we had genetic testing expedited to Washington DC, and by the time Little Miss Adorable was 15 days old we had our diagnosis of Prader-Willi Syndrome.
An hour after the Chief of Genetics told us the diagnosis, I announced to the pediatrician overseeing Little Miss Adorable that I wanted her to come home.
Little Miss Adorable still used a naso-gastric tube for feeding, and despite our best efforts to help her use an adapted baby bottle (the Haberman Special Needs Feeder), she still could not consume enough calories to sustain herself. The medical team was reluctant to send us home with a floppy infant with a feeding tube in her nose. The concern was that if the tube was not in the correct place she could asphyxiate.
The medical team wanted to wait until Little Miss Adorable could feed independently before sending her home. I said that if feeding was the only problem we could deal with that at home. The medical team said to keep trying to get her to feed independently, wait and see.
In the meantime Little Miss Adorable was lying flat on her back in a sterile nursery, getting no stimulation apart from the scheduled feedings and diaper changes. She was spending hours a day sleeping and staring at the ceiling – hardly optimal conditions for child development.
I wanted her out.
Hypotonia (very poor muscle tone) is a trait of Prader-Willi Syndrome. As an infant, Little Miss Adorable looked like a living corpse – she was silent and still. As she lay in the nursery her head took on strange shapes as muscles sagged downward. The only time she came alive was in the bath. The water and rough towel stimulated her muscles, her eyes opened and she was alert. We had a glimpse of the child she would become.
Then she would become still again, silent and unmoving for 24 hours.
I knew that Little Miss Adorable needed a richer, more stimulating environment. Every day I asked the medical team, “Can we go home today?” Every day I was told no, not yet.
In the meantime we were trained in how to check naso-gastric tube placement and a home care nurse scheduled for regular monitoring. I started to have strange dreams about being trapped in places with long, empty hallways leading to darkness.
We had to get out.
The day we were released we took photos with Little Miss Adorable’s favorite nurse, and headed home. The sounds and sights of a busy household were stimulating. Little Miss Adorable thrived.
I got her out and involved in community programs. Little Miss Adorable and I were regular participants at our local Ontario Early Years Centre – a program for parents and their children. Little Miss Adorable joined Infant Mother Goose sing-songs and massage classes.
We continue a high level of involvement to this day – Little Miss Adorable is busy in preschool programs and community activities. Our family is always out and about at conservation areas, museums, art galleries and local events. We see the impact on Little Miss Adorable’s learning and language development – socially and cognitively, she is like a typical three year old. Yes, she has significant gross motor difficulties, and her speech is not clear. Yes, she is likely to have a learning disability when she’s in school.
But, I need to tell you that most people with PWS have mild-to-moderate intellectual disabilities. And with changes in care, we see improved outcomes. Healthcare advances have helped prevent infants from dying in infancy. And now with changes in follow-up care (getting the child out of the hospital and back at home and in the community, with support), we are seeing changes in intellectual development.
One of our pediatricians reports seeing this trend in his patients with Prader-Willi Syndrome – people in their 20s are doing better socially and intellectually than people in their 30s and up, and people in their teens are doing better than people in their 20s. And the children are outperforming the teens in terms of intellectual development.
It’s simple – get them out in the community, involve them in relationships and life. Watch them grow.
While I was writing this post Little Miss Adorable bum-shuffled around the corner, calling, “Mommy! Look!” She had dressed herself in her ballet outfit, her tutu around her chest and her bodysuit covering her arms. She proudly pointed at her outfit, and shouted, “Pink!”
Little Miss Adorable is in an adapted dance class, and loves every aspect of it – the clothes, the music, the people. If nothing emphasises the importance of getting your child out and involved in the community, this does.