Dear parent of a child with sickle cell disease,
On August 21, 2008, we were excited to find out that we would be expecting our first child. Although we knew that I had the sickle cell trait we were not 100 percent sure if dad did as well. The day that blood work came back confirming that we both had sickle cell trait was a very difficult one. I was overwhelmed with the thought of my child having to deal with any of the possible complications of sickle cell. Admittedly, although I am a former health teacher and have taught children about the disease, as much as I thought I knew was nothing in comparison to what I would soon learn.
Although we tried to remain positive that she would not have the disease and refused the offer of an amniocentesis we learned shortly after Zahara was born that she did indeed have sickle cell. The first year went without any issues and then about 2 weeks after her first birthday, Zahara experienced her first of many fevers that measured 101.5 degrees or higher. She was admitted to the hospital with a diagnosis of acute chest syndrome. Although her case was very mild, it was difficult for us as new parents nonetheless. One month later after Emergency Department (ED) and urgent care visits for five straight days she was admitted again and received her first blood transfusion. Not knowing what that entailed was overwhelming for us as parents, but we found relief in the confidence that we felt in the doctors at Children's National. We were confident that they would do what was best for our child. During the next few months, Zahara continued to have fevers that were coupled with low hemoglobin and blood transfusions. One day during inpatient rounds, Lewis Hsu, MD, suggested that we consider having her spleen removed if she had another splenic sequestration. Sure enough another splenic sequestration followed in the months that followed. As a team, which included Helge Hartung, MD, and Lori Lutchman-Jones, MD, we decided to move forward with chronic transfusions and prepare to have her spleen removed once she turned 2-years old. Within the same week we came up with a plan of action. She is such a trooper. You would have never known because she was cheerful, playful, and presented with no signs that her hemoglobin was so low. She was immediately admitted. She took a turn for the worse that night and began presenting with chills, vomiting, high breathing rate, and increased blood pressure. This by far was the scariest moment our lives. Never had we heard doctors mention our child's name and the letters I-C-U in the same sentence until this night. I tear up as I write just thinking of all that was going through our minds at that time.
With all of the faith we had in the doctors we also leaned on my faith in God. We prayed and prayed. Our prayers, along with increased fluids through her IV prevailed and all of her vitals returned to normal. Not only did she not require another transfusion she never had to "visit" the ICU. It was then decided that we had to move forward with the splenectomy.
On February 18, 2011, Zahara had her spleen removed by Cynthia Gingalewski, MD, at Children's National Medical Center. We are super excited to say that she has not spent a night inpatient since she was released following surgery! We came home with a new child. It was like meeting her for the first time. The level of energy she had once she came home is unexplainable.
We are so thankful to the hematology team at Children's National, especially Dr. Hartung who walked us through every stage with such support. Once we saw him, we would always have a moment to exhale. It was a tough decision to make, but Dr. Hartung's confidence in the Hematology team as well as the surgical team gave us the peace of mind we needed. There is no question in our mind that the surgery was the right thing to do for Zahara.
We are assuming if you are reading this letter that you are at a similar crossroad. Be encouraged in knowing that our little girl is an energetic, spunky 2-year-old and we are confident that has a lot to do with the excellent care she receives from the team at Children's National. Know that as parents of a child with sickle cell that you do have the strength on the inside to deal with any situation that may arise. In the midst of every situation remember that there is no situation that you will face that you (along with your support team) are not well-equipped to handle. Although we are confident in the medical staff, we encourage you to research for yourself and come prepared with questions. The more information you have, the better prepared you are to make tough decisions. Also remember that even when you feel like it's too much to handle alone that you are never alone. You have parents like us who are dealing with similar issues in your corner!
Zahara's mommy and daddy