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Saturday, September 19, 2015

Sickle Cell Anemia is a Blood Disorder.

    Base on the OMS statistics, 7% of the world's population are carrier of this blood abnormality. The early diagnose must be done, if not during gestation, through the Newborn Screen.  It is estimated that about 3,000 children are born with sickle cell disease each year in Brazil and 200,000 with sickle cell trait. Sickle cell anemia is the most common hereditary disease in Brazil, Africa, Central America and the United States. It is caused by a genetic mutation in hemoglobin, making the abnormal red blood cells and giving the shape of a sickle, so the denomination. In southeastern Brazil, the prevalence of abnormal gene is 2.4% (trait). In the Northeast reaches between 4% and 6% rising to up to 10% among blacks. According to the OMS, in Brazil there are more than 2 million white or black carriers of of sickle cell trait. 
      In general, the parents are asymptomatic carriers of the sickle cell gene (have an altered gene and do not develop the disease), but pass the altered gene to the child (when the abnormal gene comes in double dose, father and mother = homozygote ). It is estimated that each year about 1,000 babies may be born with the disease (two abnormal genes). The clinical symptoms may be present already in the first weeks of life, however in many individuals, symptoms such as anemia and bone pain, appear only after 6 months of age and are not usually recognized by the pediatrician. This ends up delaying diagnosis of sickle cell disease, on average, four years. However, the disease can cause fulminant infections in the first year of life. Without early diagnosis and specific medical care, 25% of these children will die before reaching age 5.

Friday, September 4, 2015

Most wanted and waited...

As I woke up today, and checked the calendar a thought just came to my mind and a feeling that took over my heart. September 4th... It happened to be the date, the birth date of the day we decided to bring a new addition to our family. The circunstances were of sadness in one hand. We were about to leave the hospital after a 4 days stay with our Prince Caesar. It was the first hospitalization in his life and due to Sickle Cell Anemia.
We were having lunch and packing our belongings, when the doctor came to show us the images of his brain. But at that point I had already told my husband that my wish was that our son would have the transplant. Then we told them.
It is hard to think that it took so long, and despite all that we went through on our way until today, looking at our children, and how beautiful and matched our kids are we can only thank God.
The road until here almost broke us apart... But now we feel it strenghted us.
We still one unit!!!! We are a family!!!!
And today we celebrate life!!!!! We are so gratefull for our babies!!!!

Tuesday, September 1, 2015

September is Child Cancer and Sickle Cell Awareness Month.

Lets put the word out and help others to understand what means to be born with this BLOOD Disorder....

Sickle Cell is a group of inherited RED BLOOD CELL disorders. An estimated 100,000 Americans have SCD, and about 1,000 children with the disorder are born in the USA each year. The disorder MOST COMMONLY affects African-Americans.
In someone who has SCD, the red blood cells responsible for delivering oxygen to the body become hard and sticky, and look like a sickle, that C-shaped farm tool.When Sickle Cells travel through small blood vessels, the cell shape causes them to get stuck ang clog the blood flow, resulting in pain and other serious problems such as infection, acute chest syndrome and stroke.
Normal red blood cells live about 120 days in the bloodstream; abnormal sickle cells usually day in 10 to 20 days, which causes a constante shortage of red blood cells with those with the disorder.
 SCD is diagnosed with a specific blood test, called Hgb Eletrophoresis. Babies are tested at birth, and prenatal testing is used to diagnosis SCD as early as the 11th week of pregnancy.
Relieving pain symptoms and preventing infections and other complications is the focus of SCD. Being well hydrated is essencial.

Friday, July 24, 2015

Becoming a Warriors´ Mama

For quite so long I´ve been debating with myself whether or not to start writing about my experience. I know from the little bit I have exchanged with people, we always learn so much from another's experiences, and I believe that if by sharing my story I can help and touch one person, the least, I am fulfilling my mission.
Then I came across a very well known text about having a child with special needs, and it made me think even more about the reason why I should for sure share my side.
For the life of me I have always dreamed of being a mother, and somehow I was prepared to embrace motherhood. I got pregnant about 7 months after we decided to start having children, and it was mainly because I was on Hormones and birth control for a good and solid 5 years, to treat Polycystic Ovarium. It was just a little before Christmas when we found out I was pregnant. My pregnancy was a real piece of cake, I experienced some morning sickness, but it wasn't too bad and it was mainly related to some specific food, such as onions and coffee. I was active and we usually went for a good hour and a half walking every other day. At my 7th month's appointment, my doctor made us informed that our baby was already in the birth position and I decided to move my final care to a Midwife since I wanted a completely natural and drug-free birth.
I still remember the week my son was born...
He came 14 days early than his due date. And my labor went quickly and smoothly. He was a strong and healthy little peanut, weighting 5# 12oz and 19in long. Life went like a dream. We were home 36 hours after his birth, and at his 15 days, weight checks up he was 7#.
It was few days before his 1 month check up his pediatrician called me and asked if I knew of anyone in my family or my husbandÅ› family that had Sickle Cell Anemia... Then she told me not to get stressed about it and that she was just giving a heads up since I was supposed to get a phone call from the Hematology Department, which never happened. We went for his 1 month check up and she was the one setting up for my son to get his confirmation test...
The first Hematology appointment was made for couple days later and despite me not knowing even if I had the trait, there were no labs done at that day, all they gave me was a prescription for Penicillin and a chunk of information about the clinical side of Sickle Cell. I was frustrated and all I could think was how heartless these people were. And the phrase that stung on my head was the doctor saying ¨Your child won´t be able to do the things that normal children do, but you should treat him normal¨ and she completed: ¨We are not here to scare you, we just have to wait for the best, but be prepare for the worse¨
Leaving the hospital that day O had clear on my mind that first I needed to get checked to know which kind of Trait I had since Sickle Cell Disorder can be of so many types. And I was determinate that my child would be poisoned with anything just for the sake of nothing.
After learning that I had the Sickle Cell Anemia Trait, there was nothing else I could do about it, other than accept the reality and start my journey to learn as much as I possibly could about this disorder.
The learning and getting to know it was very hard and many times I finished reading something with tears in my eyes. At some point, more I would read, more desperate I would get because I felt alone. I was far away in another country, and couldn´t talk about it with anyone.
For countless times, I have asked God, why he had allowed it. I was quite too often check for signs of symptoms and now I feel like I didn´t enjoy, as much as I could, my childÅ› first year of life.
I´m very thankful that through my searches I found a Community and was able to, at least through the internet, have someone to open up about my fears.