Magazine article The Exceptional Parent

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

Magazine article The Exceptional Parent

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

Article excerpt

Over the next year, 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.

We will spend the next year visiting with Amita and Samir and their daughter, Anjali, a fictitious family. We will learn about Medical Home through their experiences.

After work Amita met Samir at a local cafe for a light dinner. While the young couple ate, they finished writing their "for-the-nursery" list.

Amita was pregnant with their first child. Except for a little morning sickness in the first trimester, Amita had felt great during her pregnancy. Now she had made it to her third trimester--only 11 weeks until they would meet the newest member of their family!

After dinner, Amita and Samir headed over to the nearest baby-goods store. The happy couple strolled the aisles for over an hour. Would their little one really need all of these plastic, multicolored, battery-powered gadgets? Feeling overwhelmed by the number of choices, Amita and Samir decided to purchase a baby monitor, a beautiful crib blanket, a stroller, a car seat, nursing pads, and a package of diapers (size 1).

Amita woke from a sound sleep at 1:30 a.m., feeling a sharp pain in her belly and wetness on her sheets. Her water had broken. Alarmed, Amita shook Samir's shoulder until his eyes opened--the baby wasn't due for weeks. What was happening? Samir called 9-1-1 and stayed with Amita, holding her hand until the ambulance arrived.


The ambulance reached the house only 14 minutes later, but it felt like an hour to Samir. Amita was having contractions. Samir called their obstetrician and let her know that Amita was in labor. The doctor said she would meet them at the hospital.

At the hospital, Amita was rushed to the Labor and Delivery floor where the nurse administered intravenous medication to try to stop the contractions. Samir stayed downstairs filling out admission paperwork. Amita felt nauseous, weak, scared, and alone. By 2:15 a.m., Amita was dilated 8 centimeters with contractions every three minutes. Their baby would be born tonight.

Baby Anjali entered the world at 2:38 a.m. As soon as Anjali was delivered from the womb, she was handed to the neonatologist who was on-call, Dr. Robinson, before Amita and Samir had a chance to see her. Anjali was not breathing.

Dr. Robinson was able to resuscitate Anjali, and the baby was settled into a Neonatal Intensive Care Unit (NICU) before Amita or Samir could hold her. In the NICU, Amita and Samir finally got to see their baby girl. Anjali had thick black hair and a cleft in her chin like her father. The baby weighed only two pounds, 6 ounces. She was on a ventilator, and her little bed was surrounded by flashing, beeping, colorful monitors--monitors so much more sophisticated than the one Amita and Samir had purchased just a few hours earlier at the baby-goods store.

Anjali's nurse that first day was Doris. Doris had worked in the NICU for over 10 years and had become adept at helping new parents cope with the stress of their baby's health problems. She knew that the NICU could be an intimidating place. Doris did everything she could to make Amita and Samir feel included in Anjali's care.

As Doris worked with Dr. Robinson to stabilize Anjali, she explained the tubes, fluids, lights, and sounds. She reassured Amita and Samir that Anjali was in a wonderful NICU with great doctors and staff. Anjali stabilized after a few hours, and Doris hugged the new parents and sent them back to Amita's room with a Polaroid picture of their baby girl, suggesting they get some rest. Most importantly, Doris provided words of encouragement: "Your daughter is stable now; she is sleeping. We will work as a team to be sure Anjali gets the best care possible. …

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