Greetings from California,
My name is Sheila Marchbanks, I’m a 46 years old and I am living a very full though sometimes challenged life. I was diagnosed with Sickle Cell Disease as a child. The initial diagnosis was that I carried the trait, later I was incorrectly diagnosed with Sickle Cell Anemia, and as an young adult correctly diagnosed with Sickle Cell Beta Thalassemia.
Throughout my life I have lived with denial (by myself as well as family members), with pain, with confusion, with erroneous medical information, and with hope.
I am extremely fortunate to have Persistent Fetal Hemoglobin (PFH). While I was pregnant for the third time, our first two ended in the lost of our children due to sickle cell infracts of the placenta and other SCD complications, my husband, Tony and I were sent to the Genetics Institute of California in Pasadena. It was there that the diagnosis of SB+T with PFH. Praise be to God for there at the age of 30 many of my questions were answered.
Due to the PFH, I have been blessed to lead a very productive life. With the positive encouragement and modeling of friends and family, I have a Bachelors degree in Business as well as a MBA.
I have just recently retired from working in the Aerospace business as a Manager in the Proposal/Pricing, Contracts, and Negotiations Business segments. I should say semi-retired for I am blessed to select coming home to be a full-time Mom two beautiful teens. The first live birth was our son Micah, who will be 16 years old on Monday February 9th, 2004. Our second live birth is our precious daughter, Westlynn Jimise, who was born 17 months later.
God is good!! He gave me and my husband the courage to try again. He gave us the faith to believe that we could have a family. God is the great provider, and He gave us the medical care needed to complete two pregnancies successfully.
We, my husband and I, learned at the Genetics Institute that my high levels of fetal hemoglobin had and has continued to serve as an antidote to frequent and severe crisis. Yes, I have experienced many crisis throughout my life; however, I believe that I have been speared perhaps more crisis and associated health decline due to having this Super Baby Blood as I call it.
It is my understanding that one of the newer therapies for SCD is the use of Hydrouria (maybe spelled incorrectly); that this drug’s side effect when used to treat Leukemia is the production of FH. Fetal Hemoglobin serves to fight off or displace sickling cells, hence minimizing or eliminating painful crisis. So here I am blessed with my own PFH!! This news, that I have PFH, received at age 30 provided answers for me.
Throughout my childhood when I was diagnosed as SCT, there e were implications that I shouldn’t be sick because at that time my family was told that I only had the trait. Though as a toddler, I had delayed walking due to painful swelling and as a child pain followed me particularly in the winter and when I was overly exerted in play or sports. For now I know, this is why I am overall so healthy, yet I have these episodes of fatigue, pain, limping, etc. Now both my mostly ‘healthy self’ and my
sometimes ‘sick self’ were answered. I could stop doubting who I am!! I could begin to praise Him (God) for who HE IS all the more. For He gave me this condition so that I may serve Him, bring Glory to His Name, and realize His purpose for my life!
It’s funny because up until our visit to the Genetics Institute when I was 30 whole years old, my blood disorder was pinned on my deceased father. Though now it makes no sense, my Dad was identified as the contributor to both my Sickle Cell gene and my Thalassemia gene. My Mom had no idea that she was a carrier of Thalassemia Minor. I guess we figured that the Sickle Cell and Thal were part of one gene. We smile about this now, saying how we thought that I got my ‘bad blood’
from my Dad!!
This goes to show how accurate testing (for I was tested at another facility when I was 30 years old and told that I had Sickle Cell Anemia) and family counseling are critical.
For every decade my diagnosis changed, at 10 I was told I had the trait, at 20 I was told about the Sickle Thal as though it was 1 gene, and at 30 correctly told that I have SB+T. Much thanks to Pat Corey at the USC County Medical Facility for the educational material that I consumed while on bed rest with my pregnancies. I learned so much and I pray to encourage young women whom want to become Mommies to educate yourselves.
Seek competent medical care for you and your partner before pregnancy, find a perinatologist during pregnancy, and listen and obey God’s leading in your life.
I have been told many false statements throughout my 46 years, like these quotes from Doctors: “you couldn’t have SCD, you don’t ‘look’ like you do” and “there are some people in the world who shouldn’t have children and you are one” With that statement I could have been lead to an abortion and not have my beautiful 16 son today!!
At this age, I have experienced repeated pneumonia, acute lung syndrome, avascular necrosis, 2 incomplete pregnancies, preterm labor and miscarriage, painful crisis requiring hospitalization, and discomfort in walking. But I still pursue God’s best for my life. At this stage I’m focused in on becoming optimally physically fit. This has been a challenge. I’ve had to drop PE classes due to getting sick while moderately exercising.
Reading the stories was for me the first time that I found a community of like me. I felt like I was ‘talking’ to others (outside of medical professionals), who understood my story. I certainly have been inspired today. I have never written my story like this. Thanks for the outlet.
May God Bless You and Yours,
Sheila Marchbanks.
