As they wheeled her 6-month old daughter, Asiyah, into the intensive Care Unit of the Children’s National Hospital in Washington D.C., Aimee Yacouba, prayed.
Asiyah has infant botulism. Yacouba did not feed her honey but suspects dates from California, a small taste of which Asiyah had as she was being introduced to some solid foods. The symptoms are similar to other children’s illnesses and Yacouba was thankful that she got to the hospital in time. The chaplain, Rev Kathleen Ennis greeted them and gave them a prayer rug with a yoga mat for the hard floor and pointed out the qiblah (direction to pray) to the family. She also shared the resources available to them through the office of Interfaith and Spiritual Care where clinically trained on-call chaplains are available to patients, families, and staff at any time of the day.
Alarms started going off. Asiyah’s heart had stopped. The social worker entered the room and one of the nurse guided Yacouba out of the room, putting her baby on the ventilator. A medication was enroute from California, which would help her daughter heal a little quicker. That evening one of the nurses asked Yacouba if she was fasting as it was the month of Ramadan. “She made me feel comfortable,” said Yacouba, who was worried about a disease that she could not prevent or stop from progressing.
Ramadan and Eid are hard for parents with children at the Children’s National hospital, many who are terminally ill. The closest masjid is 20 minutes away— too long to be away from a sick child. Yacouba approached the chaplain to host an Eid Salah at the hospital. There were several logistical reasons why the salah could not take plan this year despite elaborate plans. Holiday time services have been a struggle, says Rev Ennis, especially trying to figure out who will lead the service. Staff doctors organize and hold the weekly Jummah.Yacouba says families should making the same request with the chaplain's office and can offer the services of the father to lead Eid salah, as formal clergymen is not needed to hold a service.
“I just wanted a simple and spiritual Eid: a communal dua and coffee or tea, maybe some pastries and then go back to Asiyah’s room. May be give coloring books to the kids—nothing too overwhelming. There is a thin line before it gets too much,” says Yacouba. “We don’t need pity, we don't need a party. Your mind is on making dua; your heart and mind is not on a party.”
Those who wish to help create a celebration for sick children need to be sensitive to the environment of the hospital. Grandiose clowns characters based on movies aren’t allowed in the hospital, “There is a clown [at the hospital] dressed like doctor- very thoughtful, not loud and abrupt,” shares Yacouba.
Rev Ennis says an ideal Eid service would be a short and quiet with a small, celebratory boxed meal, that the families can take into the rooms to enjoy with the patients. Muslim families are scattered all over the hospital depending on where their child is receiving care. Depending on their health, patients may not be allowed to leave room for the fear of infection.
Many people get angry and bitter. “You really feel that mortality— that you may lose your child,” says Yacouba. When she came home from Children’s, Asiyah was like a newborn from the effects of the paralysis, Yacouba shares.
The Yacouba family stay was three weeks and a few days. Other families are at the hospital for many months. She saw many Muslim families at the hospital. ”There were probably many more— not all wear hijab.” Just eight were registered as Muslim. Rev. Ennis says that there are two communities of Muslims who come to the hospital—those based in the United States and those who travel from the Middle East for health care. The Sheikh Zayed Institute for Pediatric Surgical Innovation at Children’s National was created with one of the largest philanthropic donations ever made to a U.S. pediatric hospital: $150 million from the government of Abu Dhabi.
Some of the other resources offer by the chaplain's office are: ordering halal meals, providing a compass, prayer rugs, a Quran, access to imams who can answer reliogious questions, contact with Muslim funeral homes, and expedited medical records so burial can be completed in a timely manner. “Whatever can help help our patients practice their faith in an authentic manner,” says Rev. Ennis.
The resources are available but many Muslims are hesitant to ask, they assume that it is just for Christians, says Yacouba.
Yacouba could not find Muslim support group— needing the camaraderie of someone who has been there. “It would be beneficial to know if there community grief groups and licensed therapists whose background is Muslim that we can refer to our patients and their families,” says Rev. Ennis.
She would love help in curating a list of Muslim grief or support groups, collect donations of Islamic nasheeds that children can listen to in their room, approve gift baskets or decorations for the families that contain small items that can make their stay at the hospital easier. If a family needs shariah questions answers or needs a fatwa, they may ask the Chaplain to set up a meeting with an imam. The challenge is that many imams cannot visit especially during holy days and many do not offer counseling. The chaplains at Veterans Hospital on the same block often the first one the Office of interfaith Pastoral and Spiritual care call- if he is away, they move down the list. Often it is the children who are asking difficult questions and religious scholars can help answer those questions.
“We also train our staff on cultural sensitivity,” she says. Many staff members are eager to give hugs as is customary in the US or make eye contact, which may not be culturally or religiously appropriate.
Dora Black, honorary consultant child and adolescent psychiatrist writes in the British Medical Journal that mothers have reported a greater degree of difficulty with the problems of helplessness, loss of confidence in the ability to be a good parent, financial difficulties, being avoided by others, growing apart from their spouse, and fear of being unable to cope if the child should die than have fathers, who reported significantly greater difficulty with two problems—feeling left out of the ill child’s life and being worried that their spouse was too preoccupied with the dead child.
“I definitely feel that there is a need for spiritual mental health counselors. Muslim spiritual counseling is really important. There are so many issues when a child is terminally ill. You become like in segments—what's important, what’s not. you start to question everything,” says Yacouba.
If you know someone with a child at the hospital, there are many ways that you can help: Yacouba’s community was providing hot home cooked meals for them. “What made a difference for us [was] our masjid sister were cooking for us. [May husband] would bring a hot meal to the hospital as you don’t have a lot of food options. Little care packages- you don’t have things that you have at home like toothpaste,” she said. Any offer of help is welcomed, said the chaplain, as long as the family approves and needs it.
Please pray for the ill and terminally ill children and their families in our area. If you’d like to schedule an event to visit children at the hospital please visit http://childrensnational.org/giving/get-involved/volunteer#tab-4
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