Sickle Cell Warriors


 Breaking News
  • VOICE Crisis Alert App VOICE Crisis Alert App The VOICE Crisis Alert app is the first national app created for patients and families with sickle cell disease. The app stores all its data locally...
  • World Sickle Cell Day 2018 Hello Warrior Family! Don’t forget, today, Tuesday June 19th is World Sickle Cell Day. This was specially designated by the World Health Organization in 2009 to improve the education, research, and...
  • SCD Adult Support Groups in Southern California California Warriors, great news! Cayenne Wellness is now hosting monthly support group meetings in Fresno, San Diego, Los Angles, Loma Linda, and Antelope Valley. You get to meet others with...
  • Tracing sickle cell back to one child, 7,300 years ago Tracing sickle cell back to one child, 7,300 years ago Check out this amazing article by Nalina Eggert of BBC News for a journey of SCD from 7,300 years ago.  The...
  • Meet Brittany: Caregiver, poet, and writer This week’s warrior in the spotlight is Brittany Hightower.  Brittany is a caregiver who is beautiful, intelligent, and passionate about poetry. And oh yeah, she has sickle cell. How old...

Who’s Really On Your Team?


This week was a sad week for my family because after twenty years, I have decided to transfer to another hospital for the medical care for my 8 year old Sickle Cell warrior.  Knowing that everyone on your child’s medical team has your family’s best interest is one of the greatest components.  However, when you feel like the respect is lost,  no one is listening to your needs; it’s time to remove your family.  The way your family survives managing Sickle Cell daily is also a major factor.  So know who is on your team constantly because it can change from day to day.

The Sickle Cell team we were working with had to replace their nurse practitioner and that when it all changed for my family.  I would tell her things and she would not take my word for it and this was in every situation.  She had no reason to believe I would lie to her ever but from the moment of introduction; she offered me no trust.  We continued to no build trust as the months flew by.  I addressed it after our first disagreement and the SC advocate, the doctor and the nurse practitioner all sided together.  I started not to trust her either and I also started to feel as if the team was no longer working for the betterment of my family but more so to get paid.  At that moment I began to consider, after 20 years at this facility, transferring to another hospital.


My daughter was put on transfusions in January of this year. The doctor, knowing my circumstances of living far away and having no daycare coverage for my other children; told me the transfusions could take place overnight on Friday.  I agreed and we started this schedule monthly.  However, every month the nurse practitioner, in a disrespectful tone, would tell me how I am not being flexible in scheduling the transfusions; how my daughter is the only one getting this special treatment; how I am inconvienencing the doctors and how other who are single moms comply to the outpatient transfusions.  After 4 months of the same conversation and speaking to all of them; I had had enough.  I called the SC advocate next and my insurance care coordinator who both told me how the hospital is bending over backwards for me and my daughter.  I was furious because not only was her tone disrespectful but I couldn’t believe they were telling me this.  Then to top it off, they threatened to call the Department of Children and Family Services because of this scheduling conflict.  That was the last straw.

So let me help those who feel like they have no choice but to continue to receive bad customer service from hospitals and be mistreated because their child needs care.  Every hospital has a complaint department.  I filed a complaint with that hospital’s complaint department. I also got the names of the director of nursing, the hospital administrator and the medical board contact information.  I have drafted my complaint in an email and will be mailing it and emailing it and following up by phone as well.  I transferred my child to another hospital for SC care because they said I would have no choice but to work with that same nurse practitioner and I refuse to continue to work with her. Next, I called my insurance and got the information for another SC provider.  I called the new provider to find out the steps to transfer.  I then let the current hospital know the plans.  I also refused to keep discussing my disdain because I no longer wanted my daughter to remain there.  I agreed to see the same doctor until the transfer was complete.

At no time do you ever have to accept working with a team that has 0% understanding of what you are going thru in managing your child’s SC.  Even if you have explained it and they are not listening; you do not have to deal with bad customer service.  If you realize your team is not on your side, it is time to select another team.  Some hospitals have more people in the same positions and you can just change the staff of your team. My team was very limited so I had to change facilities.  You are and will always be your child’s greatest advocate. Know that and walk in that confidence. Follow your gut and never rush to make decisions.  And never talk yourself into staying somewhere that is void of teamwork and understanding of your family’s lifestyle in living with Sickle Cell.


About Author

Elle Jenae

Elle Jenae

My name is Louisetta Williams and I’m a proud single parent of a 4 beautiful girls ages 18, 13, 8, and 5. I love to refer to my daughters as my Z-babies because all their names start with a “Z” and online I often call them Z1, Z2, Z3 or Z4 in accordance of their birth order. My youngest Z-baby is 5 years old and she is my Sickle Cell Warrior. I work as a research assistant at the American Academy of Pediatrics where we research diseases that affect children all over the world. I love my job because our research helps enhance children’s health worldwide. My passions outside of work are reading, doing family activities, going to church, writing and helping people in any way I can. I wanted to write for Sickle Cell Warriors because I want to be the voice for parents who fight for their Sickle Cell Warriors daily. I believe by sharing my experiences, research and testimonies of how I cope with dealing with an ill child; I can help someone. I want to be an advocate for SCD parents who sacrifice so much and let them know that it’s okay to be perfectly imperfect.

Related Articles


  1. Lesley
    Lesley August 15, 16:14

    I experienced the same thing with my daughters school. Things were good & we felt fully supported in managing my daughters SC at school and at home. Things changed drastically when the school Nurse took up another position and a different school and was replaced by the most unfriendly, disinterested & rude nurse I have ever had the misfortune to meet. When my daughter mentioned being unwell, she would call me and inform me that she thinks my child is trying to get out school! Its very hurtful when you cannot protect your child from the people who are in place to support them when you cannot be there. Fortunately my daughter only had 1 more year in that school and after I called the nurse out on her conduct she improved marginally.
    My daughter is going to Middle school in September and im going to endure that I meet the school nurse immediately to let her know where I stand and what my expectations are from the school as it relates to my child and her SCD.
    Just a point to note: both my daughters names also begin with Z. The oldest is completely vlear of SCD but the youngest (11yo) has HbSS.

  2. Cruiser
    Cruiser December 18, 18:19

    I recently had a similar experience with my hospital visit. I’m a 26 year old HbSS. I do my best to stay out of the hospital, but sometimes it can’t be helped. In my recent visit Las month. My pain was lingering with the level of pain medications they were giving me. So they called my doctors office and asked what was the dosage that they give me when I go to their clinic. Once they found out the doctors at the hospital told me that they couldn’t give me that much medication on the level I was on because they needed me to be on a monitor while on the high of dosage. I asked if they could move me to the floor that could keep me on a monitor, while getting the appropriate dose of medication. They never answered the question and instead put me on a pca pump, with no higher dosage than I was getting before. When that wasn’t working the put me on me home medications which weren’t working and 8 hours or less they were discharging me. I had a very bad crisis that night that nearly made me go right back to them. This is my first really bad situation with this hospital. Should I give them another chance? Or should I find another hospital?

Write a Comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.


Support awareness & education for SCD

WordPress › Error

Error! Donation amount must be a numeric value.