When your child is diagnosed with a major illness or is severely injured, coping with the situation can put stress on your family, your marriage and your very self. But there is help for those whose child is severely ill or injured, from professionals, support groups and volunteer organizations in Maryland that specialize in severely ill children.
“She cannot die,” I remember thinking. I just finally met her after nine months, felt her little fingers grab onto my hand and held her close to finally breathe in that angelic baby scent. By her second day of life, the doctors suspected that something was wrong with our precious baby girl, Ayah. After five weeks of testing she was diagnosed with biliary atresia, a rare and incurable liver disease that would eventually require liver transplantation. In the weeks and years to follow, my family and I were faced with the greatest challenge of our lives and from it we have learned the greatest lessons.
Since her first surgery at seven weeks of age in April of 2003, Ayah has required continuous medical care, daily medications, several hospitalizations and procedures. In December 2008, we received the call that a liver was available for Ayah. One day after receiving her new liver, Ayah was rushed back into surgery and all of our worst fears were realized: the new liver was not functioning. As we the surgeon told us in the hospital waiting room, the façade of strength we had built over the years and the weight of the moment crushed us. Ayah was placed on life support measures and given 48-72 hours to live. Miraculously, another liver was available for Ayah and she endured a second liver transplant surgery. After several weeks in the hospital and a strict six-month isolation period at home, Ayah continues to be closely monitored by her medical team and is on a daily medication regime; but she is enjoying life again as a happy and vibrant seven-year-old girl.
For anyone who has experienced and handled a major health crisis of a child, the initial shock of the situation then gives way to fear of the unknown. In those moments of fear and anxiety, one feels as if the world is crumbling around them and that they are all alone. For me, I immediately turned to my faith for inspiration and to my family for emotional support. And along the way, I learned that I was not alone, that there was a community of families that knew exactly what I was going through and there are many caring professionals and organizations that could support us.
Stacy Casey’s fourth pregnancy was a miracle. After losing her second child a matter of hours after a premature birth and suffering the miscarriage of her third child, she was elated when Evan was born full-term in November 2002. But as soon as Evan was born, the doctors immediately noticed physical anomalies like lacking an ankle and having webbed fingers. At this point, one test after another was ordered, but each test left the doctors baffled. Needless to say, Stacy (and all of us who have experienced a major health crisis of a loved one) became an expert by asking their medical team questions and conducting their own extensive research. Stacy says she was even able to find a website for Evan’s non-diagnosis, Syndromes Without A Name (SWAN), www.undiagnosed-usa.org. Each year after Evan’s birth, new issues continued to arise, from inability to eat or swallow properly (which resulted in severe vomiting,) back problems from curvature of his spine, vision problems, seizures, and sleep apnea. Each new issue prompted Stacy to visit another specialist, more hospitalizations, more medical equipments required, and more confusion to defining Evan’s diagnosis. Given all the expenses of Evan’s medical care, Stacy’s private insurance company had to assign him a “working diagnosis” of cerebral palsy and quadriplegia. She has been touched by efforts of her community in Arbutus who have held fundraisers for Evan. Stacy says she will keep fighting as hard as she can guided by her strong faith, and she is thankful for all of the support she has received from family and friends.
In addition to faith, family, and friends’ support, families should also turn to professionals and organizations that are available to support them during their crisis. One such example is Erin Sullivan, a Clinical Social Worker at the Johns Hopkins Children’s Center. She says that families who are already overwhelmed by their child’s health crisis should know that a social worker can assist them with identifying additional financial resources to cover their child’s medical costs such as state aid or referring them to organizations such as Children’s Organ Transplant Association (cota.org) that will assist families with setting up fundraisers. In addition, Erin assists with providing families temporary housing during their child’s hospital stay. At Hopkins for instance, families may qualify to stay at the Believe In Tomorrow Foundation’s Children’s House or at the Ronald McDonald House. Our family and Ayah’s sisters were able to stay at the Children’s House; it was a way for us to keep our family together and create some sense of normalcy during a very stressful time.
And this sense of normalcy is what Catherine Northup, Senior Child Life Specialist at the Johns Hopkins Children’s Center, encourages during the hospitalization. At many hospitals, trained child life specialists are available to provide psychological, emotional, and social support during the child’s hospitalization and in partnership with the child’s family. Child life specialists use various tools to “normalize” the hospital situation such as creating “at-home” schedule that would include playtime, story time, naps and bringing favorite items from home. Catherine recommends that parents be open and honest with their child and utilize age-appropriate simple language during their discussions. She says that children will imagine it to be much worse if not spoken to and will usually tell you what they need to know. Lastly, Catherine stresses that siblings must also be included in the normalization process since they are usually not permitted to visit the hospital. With web camera technology many siblings are able to talk and see each other using programs such as Skype. In addition, Catherine suggests that siblings color pictures for each other to send back and forth, perhaps even recording songs for one another. All of these tools are ways for families to make a very “un-normal” situation as “normal” as possible.
Although our stories are different, Stacy Casey and I share a common thread — we are part of the community of families dealing with their child’s health crisis and we hope our stories will serve as inspiration and a resource for other families. With faith and our support network guiding us and drawing inspiration from our children, we move forward, hopeful and stronger.
