ANonymous-F
Age: 39

Sickle Cell S.C. beginning of a journey.

Our daughter, now 3 yrs old, was diagnosed with Sickle Cell S.C. when she was approximately 10 months old. She was not diagnosed because of a pain crisis, but rather because her left hand was swollen, which I have since learned is called Dactylitis – a condition, that occurs in infants 2 years and younger, when the blood has pooled up around a joint. It is considered to be extremely painful. However, our daughter did not feel nor experience any pain in her hand. When my oldest son noticed that his sister’s hand was swollen, he showed me. We were perplexed. We thought it could be a bug bit, but there were no puncture wounds. We thought she was having a reaction, but she had not ingested anything new or done anything out of the ordinary. My husband, who was working in Asia at the time, as his job often took him overseas, viewed our daughter’s hand through video conferencing and was also perplexed. was in Asia working. His job often took him to countries over seas. Fear began to set. What could it be: Cancer, will her hand need amputation, blood clot? I called my husband again and told him that I was going to take her to see her pediatrician. My husband was reluctant, but he agreed.

Our pediatrician was not available at the time, so our daughter saw the on-call pediatrician. Our daughter was sent for blood test. The on-call pediatrician relayed the blood results from the lab. They believe that it is Sickle Cell, but she is not experiencing any pain. This is highly unusual. Another week and a half goes by, another blood text, a phone call from our daughter’s pediatrician. Our daughter’s pediatrician asks, do you have a history of Sickle Cell? No. She continues to mention that Sickle Cell is genetic and other information that I do not clearly remember. She informs us that we need to meet with the Hematology unit at the U of A tomorrow! That night, my husband spends all night researching, reviewing, thinking, and gathering all information he can about the condition. I don’t remember how I slept that night, but I remember weeping before we had to go to our first of many Hematology appointments.

As parents, we want our children to be happy, healthy, God fearing, successful, productive members of society etc. We want our children to be better off than we are. We do not want them to struggle too much. As a result of her condition; Sickle Cell S.C. which by the way is a derivative of Sickle Cell Anemia SS, has forced us to worry and concern ourselves with matters that we would not have concerned ourselves with had she not been diagnosed with SCSC.

As parents of a child with Sickle Cell SC, there is always a ball of worry at the back of your mind that resurfaces whenever she says “owee.” Whenever she says owee or says my leg hurts there is a heavy dread – what will this mean for her: suffering, pain, discomfort, tests, hospitalizations, medical procedures. What, What, What?!

We have queried what will school be like with this condition? What will going through puberty be like? What will dating be like? What will baring children be like for her? How does the medication affect her developing body?

There is extremely limited research on patients with Sickle Cell S.C.  Most of the research about Sickle Cell has been conducted and derived from Sickle Cell Anemia SS patients. And as such, the medical community does not have sufficient evidence to comprehensively support our daughter’s condition. As there is more research and support for Sickle Cell Anemia SS patients, she is lumped in under that category.

Initially, we would protest that the mandatory procedures were developed for patients with Sickle Cell Anemia SS not Sickle Cell S.C. We would protest that the medical community should address the presenting symptoms, hear what our concerns are first instead of dismissing the presenting symptoms and working under the guise that she has Sickle Cell. For instance, while my husband was at work, I took our daughter to the hospital because she had laboured breathing. I am familiar with laboured breathing because our son has asthma. I did not disclose to the medical staff that our daughter had Sickle Cell S.C. because I wanted the medical staff to work on the presenting issue (laboured breathing). They proceeded to address the presenting issue. My husband left work and met me at the hospital. Soon after, the medical staff learned that she had Sickle Cell and the medical care turned from her laboured breathing to focus on “she is having a crisis”. The Sickle Cell Anemia SS protocol now took precedence. The medical staff, in accordance with the Sickle Cell Anemia SS protocol, now had to administer antibiotics via IV (nobody enjoys getting an IV especially a young babe), had to do blood test, urine test, chest x-ray, and administer pain medication. We went to the Stollery to continue her care. It was found out that she had pneumonia. She had endured some unnecessary procedures because the medical staff were blindly following procedures.

My husband has been a strong advocate for our daughter. He has had countless arguments with doctors on the merit of is it really a pain crisis and has demanded medical accountability. I have come to place that if our daughter is having pain, we need to manage the pain first, look at the presenting symptoms, and then Sickle Cell S.C. My husband, who has delayed action on the bases of making sure that what our daughter is feeling is real or has delayed action because he knew that the medical team would automatically treat the situation as a Sickle Cell Anemia SS pain crisis, which could lead to several uncomfortable procedures up to and hospital admittance for several days, has now, I believe, come to a similar place as I have.

As soon as our daughter complains about pain, particularly in her joints, we are on the same page and give her pain medicine right away. We have learned that if you can administer medicine at the onset of her pain, it could mitigate the overall pain outcome. It is easier to manage the pain at the onset than it is when it is raging. (Thank you Ufuoma for sharing this tidbit)

I would be lying if I said that Sickle Cell has not impacted our marriage. It has. But to be fair, any couple who has had a child with a medical condition impacts a marriage. In such situations couples can expect worry, fatigue, irritableness, anger, hate, regret, relief, and fear. For example, I have been angry with the situation, my husband, and medical staff. I have experienced relief because this time it was not that bad. It could be worst. Don’t people say there is someone else in a worst condition than you?

In the beginning stages of our daughter’s diagnosis, my husband and I experienced a lot of tension, stress, and explosion. Both of us who have never been in this situation before were trying to navigate through the diagnosis and survive.

We both had thoughts of how to keep our daughter healthy that did not always align with each other. Our focus had moved from the family unit to focus solely on our daughter. In times of stress, people tend to withdraw. We were no different. We had minimal engagement with each other and other support systems when our daughter was not well. But people cannot endure stress for a long period of time in isolation for long before they begin to crumble. Now, I have learned to “lean in”, connect, and be empathetic with my husband during times that our daughter is not feeling well. I also connect and ask for help from my social support system.

When our daughter is not well, we have each had to miss days or weeks off work. Our daughter has spent her birthday in the hospital. I have spent my birthday in the hospital. When she has been well, we have avoided gatherings/engagements to maintain her streak of good health. I don’t want her to cry or sweat too much for fear that she will loose too much liquid. I cannot speak to how my husband feels, but in the beginning, he had mentioned that if I had not taken our daughter to the hospital that first day, we would not be in this situation. Further, it has been mentioned that I am the S carrier while he is the C carrier. In these sentences, there are undertones of blame and frustration. Blame really does not help the situation, nor do we know what could have happened if things were done differently. This has been reconciled because I did not do anything wrong by taking our daughter to the hospital to inquire about our daughter’s health and well being. That is what people typically do. What tends to circulate in my head is that I wish I had a blood test before marriage, and even more so I wish I had knowledge and awareness about Sickle cell. Like many people, I have seen physicians and not once did any doctor or medical staff bring an awareness about sickle cell; a condition that affects African Americans, East Indians and such. I see posters about diabetes, blood pressure, HPV, and such but nothing about Sickle Cell. For a woman of African decent, I think this should have been part of my medical care.

Thank you Not Just You. When we were in the hospital, taking shifts with our daughter. It was my shift to stay in the hospital and my husband’s turn to be at home. Our daughter’s nurse came into our hospital room and presented me with a bag. Our nurse explained that it was a gift to our daughter from a young lady who as a result of her experiences, had started a Sickle Cell support foundation. I opened the bag and was blessed. I was touched by the card that was signed by real people, not by a generated machine. And I was blessed by the confirmation that we are not alone. Of course, you know that you are not the only one in this situation, but many times the struggle happens in isolation. There is not a Sickle Cell unit yet whereby you can go and know that the staff look like you and the patients are going through the similar situation at which point you might be able to share and support each other. In the hospital, it can be rather lonely. While in hospital, I have wondered; are you going through the same thing we are going through? Sometimes, secrecy, fear, and shame stop us from reaching out. What would it be like to bring awareness to people who could be affected by this condition? What would it be like to have a safe space to share, grieve, support, express an array of emotion and encourage each other? I think the tumultuous journey would be a little bit better.

Our daughter is doing well, we are managing her condition, albeit a lot of unknowns and still up and downs.  I am anticipating that she will live a full, happy, healthy, successful, God fearing, productive member of society etc. life.

I am grateful for all the support that I have. My mother, family, church, friends, employer, medical team, Sickle Cell Foundation of Alberta, Not Just You Sickle Cell Support Organization. And I am sure this list will continue to grow as we continue our journey. People cannot function under pressure in isolation for a long time. They can, however, continue on with a support system.  My husband has asked me why do I tell or disclose our daughter’s condition to a person? I share because I am honest about my reality and am coming into acceptance, I share because when people know, they might be able to help and know what kind of help to give or offer. I share so that I can keep her safe. I share because there is nothing to be ashamed of (Our daughter is wonderfully and perfectly made by God. If you met her, you would know what I am talking about. And she is not her condition). I share because there is healing in sharing. I share to make a difference, a call to action to educate, bring awareness and increase resources.

Thank you for listening.