Malik and D'Anya Lewis
This is a personal story shared by a family whose child has sickle cell disease (SCD).

Sickle cell disease is a blood disease that children inherit from their parents, whether the parents actually have the disease or not. The disease causes the red blood cells to make abnormal hemoglobin. Hemoglobin is the part of the blood that carries oxygen in the body.

There are different kinds of sickle cell disease. Some kinds are mild, but others cause serious illness.

Malik and D'Anya have Sickle Beta + Thalassemia, a mild variation of the disease. They were fortunate with their early diagnosis through Newborn Screening; Washington State included testing for Sickle Cell disease in 1991. One parent carries the Sickle gene, the other the Beta gene. There is a 25 percent chance that a child born to both parents who carry the trait, will have the disorder; these two little ones were both that one in four. They both started early treatment (at about 2 months) of penicillin every other day to help prevent the complications and acute attacks that can occur from this disease. They currently get 2.5 mil every other day.

In 1987, a National Institutes of Health panel recommended that all babies be screened for sickle cell anemia. To date, more than 40 states screen for this disorder, which affects about one in 400 African-American babies and also occurs with some frequency among people of Hispanic, Mediterranean, Middle Eastern and South Asian descent.

Early treatment can prevent some of the complications of sickle cell anemia. Young children with the disease are especially prone to certain dangerous bacterial infections, such as pneumonia and meningitis.

Studies in recent years have shown that treatment with penicillin, beginning by 2 months of age and continuing to about 5 years dramatically reduces the risk of these infections and the deaths that result from them. Newborn screening alerts the physician to begin antibiotic treatment before infections occur.

Malik also has Isovaleric Acidemia (IVA); we wrote an article for the OAA newsletter in the January 2000 issue. Washington State currently is not screening for Isovaleric Acidemia.

D'Anya was screened at birth for IVA because she has an older brother with it. Mom was followed carefully by a genetic specialist through this pregnancy and they were ready to perform all tests and treatment necessary. She was started on a formula similar to her brothers while waiting for the results. She was tested twice before leaving the hospital with a negative culture returning for the IVA. I suspect that if her tests came back positive for the IVA, she would have experienced a much more pleasant beginning of life without the life-threatening affects Malik has endured.

Malik's diagnosis with this form of SCD came at a time when Tiana and Donovan (Malik and D'Anya's parents) were just beginning to learn about caring for a child with IVA. I guess we all put this on the back burner and didn't learn that much about it. D'Anya's positive diagnosis with this came as a little more of a surprise and wake up call to start learning more about this and how it would affect their lives. We were and continue learning so much about the IVA that adding another genetic disease to our list was a bit overwhelming and worrisome. I believe the fact that their doctor's reassurance that chances for complications were slim, because of early penicillin treatment, had an impact on our reaction.

This variation of SCD has not affected their lives so far. We have been concerned because of the penicillin intake and all the information we receive regarding how it could affect their immune systems. Penicillin has proven to help increase the well being and life span of Sickle Cell patients. Malik is prone to hospital visits and stays because of the affects he has from his IVA so attending physicians in emergency rooms always need to know about the SCD also. They both seem to get every bug that is in the air; that may be simply because there are so many out there these days though.

I admit, I never thought I'd be able to pronounce Isovaleric Acidemia as well as learn about all of the other disorders that affect so many lives. This paper has helped to open my eyes to another disorder babies can suffer so severely from if not diagnosed at birth (SCD).

There are other "treatable" disorders that have been added to NBS in some states that have proved that if diagnosis is early, we can avoid some of the complications that can lead to life-long effects and struggles for these babies and their families.

I've recently volunteered with Tyler for Life as a state coordinator helping to compile and give information regarding adding disorders to our NBS Program. A recent visit to our Health Department included a tour of the labs and the process a blood sample goes through until the bitter or sweet end of the findings. We currently have the technology to test for most of these disorders. What are we waiting for? If cost is an issue, I say give patients the choice. The general message I'm hearing from some health organizations is that these disorders are so rare that they aren't considered for including in NBS. They don't seem rare to me; I've read enough stories from affected families to convince me that every baby should have the right to early diagnosis so treatment can begin. Everything I've read has confirmed that Newborn Screening for these disorders can steer these babies' lives into healthy and happy ones.

We need to get the information out to the public as well as our health care organizations; my mission is to help do that. This mission comes from the exposure we were forced into because of these two wonderful little ones. It's unfortunate but true that some of the passions we focus on in life are not always a choice. We have learned much; I feel it's our responsibility to share that information so others understand the need to add all these treatable disorders to Newborn Screening Programs.

Sincerely,
Peggy Harris
Written May 2001 by Peggy Harris
Grandmother to:
Malik Lewis born July 31, 1998 (IVA and Sickle Beta +  Thalassemia)
D'Anya Lewis born December 29, 1999 (Sickle Beta + Thalassemia)
Seattle, Washington

HOME |  ABOUT US |  PRESS RELEASES |  DONATE NOW |  VOLUNTEER NOW

Contact Save Babies Through Screening for questions about the content of this site or
the Webmaster for questions about technical issues related to this site.
Terms of use for this site.