David's story continued.....

In April of 1989 I knew something was wrong with my new baby boy.....he was always sick, had diarrhea, didn't eat, losing weight, coughing, and cried a lot. I would take David to the doctors every other day....and on the day he was not at the doctor's office I called. David went from a healthy 18 lb boy to a sickly 9 lbs. I knew something was wrong....but the doctors keep telling me that he sounded good and nothing was wrong. My husband and family thought that I was overreacting. But I knew my son!

On Sunday, April 30th David's lips turned blue while he was coughing. We took him to St Christopher's hospital in Philadelphia....were we lived at the time. When the staff took my son  into the ER they put a pulse ox on his little finger.....at the time I had no idea what the number's meant....but his oxygen level was at 86....all of the sudden the nurses and doctors threw us out of the room with no explanation...we were scared! What was wrong? Once we were called back into the room the parent of the child that was in the next bed to David was looking at us with pity......they knew something that we didn't know yet. All I could do was pray.....the doctors told us that David was very sick and they didn't know why.....they didn't know if he would survive the next few days.......

It was April 30th and our first son David was in the hospital with some mysterious illness that had the doctors perplexed. When David's oxygen level was extremely low they took a chest x-ray and discovered that his lungs were full of pneumonia. The doctors usually hear crackles when a person has pneumonia...yet all these months David never did. This was pointing the doctors to a specific disease however, they needed to preform a lung biopsy to determine the cause of the disease.
Once the doctors performed the test they put David on a ventilator so that he could breathe. It was discovered that David had a rare pneumonia that is caused by a germ that we all have in our throats...with a normal immune system we fight it off....but he was not able to fight off this germ. The doctors asked us the standard questions regarding the possibility of me having HIV...and that I could have passed it onto him...of course this was impossible....I never did drugs, had a blood transfusion or had relations with anyone besides my husband. I was scared......I thought maybe I could have picked up HIV some other way....you have to understand the scare of the 1980's ....it was believed by the public that one could get HIV from mosquito bites, or toilet seats....The doctors soon explained that they needed to do more test but that David was born without an immune system. Why GOD? This was our immediate question.....why us?
The doctors said that David should begin to show improvement with a strong antibiotic that would help him within 8 hours. However, David did not get better. They needed to switch to the last antibodic that was left to fight this pneumonia, Bactrum. The doctors again said we should know within the next 8-16 hours if the med's would work. Meanwhile, we prayed! God was are only source of strength. We had our family gather around us...our church family visited us and prayed for us....but we still felt alone. No one understood. But when we turned to the LORD....he gave us peace. We were still scared and felt like we were drowning....but the LORD gave us great strength. We would draw on this strength many times throughout the years.....and the LORD always took care of us.

Eight hours, ten hours, twenty-four hours went by and David was not any better. He seemed worse. The doctors told us to start making funeral arrangements....

David....my bubble boy!

My husband and I were high school sweethearts.....we were married in 1986....and in December of 1988 God granted us a very special Christmas gift...our first son!
We were so happy to finally have our son......I was 21 years old and I was ready to be a mom, a wife and live happily ever after! However, this was not in God's plans......
David was only one day old when he became sick....it started as a cold....the doctors told us that it was just infant congestion...however, after a few weeks I began to question the doctors as to why he still had the cold......So then it was decided that he had allergies.
What did I know? I was a new mom.....I believed the doctor and did what I could to make my son comfortable while he slept....I raised the head of his crib and put on a humidifier. Soon he began with thrash...and diarrhea.......The doctor just treated the conditions and moved on....however, by April I knew that something was wrong. Really wrong!

SCID KIDS

My childhood friend has encouraged me to share my story. So I decided to take her up on the challenge and I appreciate her encouragement.......
My husband and I have four wonderful sons! Two of which have a rare genetic disease called Severe Combined Immunio Deficiency Syndrome - (SCIDS) or as most people understand it as "the bubble boy" syndrome. This is a rare genetic immune system deficiency.
This is NOT AIDS or HIV.....when my son was born (in the late 80's) this is automatically what people thought. SCIDS is an immune system problem but were HIV depletes a healthy immune system...SCIDS kids never had one to begin with in their life.
I am blogging to shed light on this subject. Back when my first son was born there was no one to reach out to....there was no physical person who understood what a parents fear was and how to handle this diagnoses.  Oh there were doctors to explain the condition.....but no one to say "Hey, I walked in your shoes....it is tough....but you CAN do it!"
So this blog is to reach out and say I understand.....I know how you feel.....and it is horrible and you feel like this is the end and there is no light in the tunnel....but this is just NOT true. I have lived through 23 years of this process...my son was one of the first boys to have had a mismatched bone marrow transplant (more about this later). But I am here to tell my story, explain all the confusing information and to educate others about SCIDS.

(Bubble boy...David V)...