Can't we stop the world just for a minute?

Wow--it really has been forever since I posted. I have been doing really well, just the occassional stunned moment, or something catches me off guard and I lose it, but mostly things have settled down and I am doing o.k......That is until this week, things are really starting to get tough. I am so fortunate to be loved and supported by so many amazing people...that helps. I have read many stories of people who have lost a child whose family and friends think they should "be over it" Nobody in our life is like that--not our family, friends or bosses. I think everyone we know has been impacted and are not over it themselves, this is every parents worst nightmare, right....so anyway, I feel blessed to have so many kind, giving, generous, loving people in my life.

A friend of mine just had an amazing, beautiful little baby girl...she felt guilty talking to me about her and I told her that I don't have any jealousy of other babies. They still bring me the same amount of happiness and joy that they did before we lost Sophia. No one contributed to our tragedy, so no one has anything to feel bad about.

On the advocacy front...not much going on. I did find an article which said that the incidence of congenital asplenia is 1 in 2000....way higher than most of the diseases they test for. This same article also told of two siblings who developed sepsis and were found to be asplenic. They then tested the rest of the family and found that the mom and another child were also asplenic. It really rekindled my curiosity about whether Mike or I might be asplenic.... We decided to move forward with getting blood tests for us and abdominal scans if we can....

Mike wrote this amazing letter to the group savebabies.org that advocates for newborn screening. We got a letter back (which I can't find at the moment) from the head of research saying that we should keep pushing forward with this, the main obstacle seeming to be that the screen can't be done with a filter paper test. Anyway, here is the letter...I will probably be posting much more this week...it is shaping up to be a tough one....

To Whom It May Concern,

My wife and I are very interested in learning more about the Consumer Task Force on Newborn Screening as the recent death of our 16 month old daughter Sophia, in April, from undiagnosed asplenia (and the resulting overwhelming sepsis) has sent earthquakes through our life and family. We are committed to furthering knowledge and understanding, and have been in contact with many doctors, some on a national stage, even state legislature, to see if something can be done to minimize a repeat occurence for someone else's family. My father, Marty Wilcox, was a founder of ultrasound in obstetrics in the 70s, and he asked a simple question after Sophia passed. If someone who suffers from and does not have the means to combat simple bacterial infections due to the lack of a spleen, couldn't much be done to ensure survival if diagnosis can be made early through a simple organ checklist being taken when the mother is already most likely getting ultrasounds done for her unborn baby? Howell-Jolly bodies are indicative of a failed or missing spleen in the blood of such an infant. Can't an additional test be added to the blood draw every infant goes through in their first days of life? Polysplenia is another problem that could be ferreted out with such tests. The treatment is a simple one, antibiotics and parental awareness. Sophia was asymptomatic in most regards, and though her medical file is large for one her age, she didn't have the more severe syndromes associated with asplenia like heterotaxy or Ivemark's Syndrome. There were signs we have found after the fact like breathing issues and a hemivertebrae, but those connections are all the more sorrowful now.

We feel compelled to make her short life and death helpful to others. Please let us know any way we can help, and we will both become familiar with your Web site and efforts.

Thank you,
Michael and Grace Wilcox