Magazine article The Exceptional Parent

One Family's Journey: Medical Home and the Network of Supports It Offers Children and Youth with Special Healthcare Needs

Magazine article The Exceptional Parent

One Family's Journey: Medical Home and the Network of Supports It Offers Children and Youth with Special Healthcare Needs

Article excerpt

In this 12 installment Medical Home series, EP will present a case study about the American Academy of Pediatrics' Medical Home Initiative. A "Medical Home" is not a building. It is an approach to providing healthcare services to children with special healthcare needs.

This article presents Part 5 in the series as readers learn more about Amita and Samir and their daughter, Anjali, a fictional family. EP readers will learn about Medical Home through their experiences.

Samir had a lot to do and a list to prove it. Tomorrow night was his 10th wedding anniversary with Amita. He wanted it to be special. He had to:

* Pick up the flowers

* Confirm the babysitter

* Double check the directions to the restaurant

* Find an envelope for the card the girls had made for Amita

So much had happened since their wedding ten years ago. As Samir looked over his list, he chuckled. It reminded him of the list he and Amita had made six years ago when Amita was six months pregnant--the list they made a few hours before Anjali was born. Those first months were becoming a bit of a blur. He couldn't remember the names of some of the medications, the nurses, the procedures. But he would never forget how little Anjali was, how hard it was to walk into the NICU that first time and see her with so many wires and tubes and catheters in place. He would never forget some of the medicalese he now knew: preemie, oxygen, nasogastric feeds, durable medical equipment, mafos (the ankle foot orthotics to stabilize Anjali's walking). He had not forgotten some of the sadness he had felt, how tired they both were, how scared.


Now Samir and Amita had another child. Vashti was born at 39 and 3/7 weeks, weighing 7 pounds 2 ounces, exactly three times what her sister Anjali had weighed when she was born three years earlier. Vashti had seemed so easy those first few months. She only spent two days in the hospital with Amita; she breast fed easily, never needing a tube down her nose, reflux medication, an apnea monitor, or a visiting nurse. Although she was a healthy, robust infant, Samir and Amita still found themselves wandering into the nursery in the middle of the night, just to make sure she was okay.

Samir wanted their anniversary dinner to be special, a celebration of all the good things they had accomplished together, raising Anjali and Vashti, creating a wonderful home life, keeping the Hindu traditions alive for their two American girls. The family just celebrated the Hindu festivals Holi (festival of colors), Diwali(festival of lights), and also celebrated Christmas. Reflecting on everything, Samir didn't want to make more lists at this dinner, even though he and Amita had a lot to do. Anjali was starting kindergarten in the fall! Samir was so proud of his little girl! She had even learned to fold her hands to the Lord Ganesha before embarking on this new journey!

Anjali was now five years old. Amita and Samir were grateful for how well she was doing. How fast the time has flown! Just yesterday, it seems, she weighed a mere three pounds and had a nasal cannula with oxygen in her nose. Now she was a happy-go-lucky five-year-old! She had done well in preschool. Her teacher suggested to Amita and Samir that they begin preparation for her enrollment in kindergarten. Anjali wasn't ready to start elementary school without some help. She had asthma. She wore glasses. She could only walk short distances with her braces. She would need learning support. Perhaps she would need services her parents hadn't even thought of.

Amita, too, was excited to be having a romantic, anniversary dinner with her husband. She had also been thinking about their 10 years together and all that had happened. She was impressed with how much they both had accomplished, and she wanted to celebrate their success. She knew they should enjoy this adult time together--but what better time in a quiet room with dinner cooked by someone else and no kids to interrupt to talk about what was on her mind: Anjali was starting kindergarten in the fall, and Amita was anxious! …

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