Simon’s Fund & Sawyer

June 28, 2012 at 7:02 pm | Posted in life after loss, Love, SIDS, silver lining | 5 Comments
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Simon’s Fund

Simon’s Fund provides heart screenings, funds research as well educates people about sudden cardiac arrest.  Simon Sudman “weighed six pounds, 15 ounces at birth with an APGAR score of eight and nine. He was at 50% for weight and 25% for height and every few hours, he’d finish a bottle (except for a four-hour stretch overnight). ”  Everything seemed very normal.  However, Long QT (a hereditary heart condition) ran in their family.  Simon died when he was just a few months old.

The Sudman’s created Simon’s Fund in memory of their baby boy.  The mission of Simon’s Fund is “To save a child’s life . . . and then another, by raising awareness of conditions that lead to sudden cardiac arrest and death.”  According to their website they have screened 3, 948 hearts and saved 38 lives.  After his death, Simon’s mother, discovered that she had Long QT.   She was treated and is fine now.

According to a study by doctors David Tester and Michael Ackerman, 15%  of all sudden infant deaths are due to arrhythmias.

Sawyer 

I thought for about a year that Sawyer died from Long QT.   Sawyer’s pathologist was able to put Sawyer’s cord blood in Dr. Ackerman’s study at the Mayo clinic.  Dr. Ackerman was able to determine that Sawyer did not have Long QT.  Sawyer will remain in the study.  Maybe one day they will determine his cause of death.  Maybe they will never know what caused Sawyer’s heart to stop.

If Sawyer had died 5 or 10 years ago his death certificate would have listed his cause of death as SIDS.  Now, doctors like Dr. Ackerman have helped to discover that many SIDS cases are actually due to undetected heart conditions.  I cannot express in words how much I wish that Sawyer had a heart screening (along with a pulse ox screening).  I am so grateful that families like the Sudmans are bringing awareness to how heart screenings at birth can change the whole world.

Thanks to the twins

July 28, 2011 at 10:42 pm | Posted in Death, Grief, mourning, parents, SIDS, twins | 14 Comments
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Thanks to the twins I have to get up every morning.  After Jake died, there were days I did not see the point in getting out of bed. 

Four months after Jake’s death, Evan and I spoke to a neighbor who had 2 older boys and a 3 month old baby girl who died.  As Evan and I spoke to the parents about the death of their daughter, the 2 little boys were running around us.

As we walked away from their house I thought about how I could cry all day and go on long walks.  I thought how much harder it must be for them to have to get up every day and take care of 2 other children while grieving for another.  And, if I am honest with myself I envied that they had other children at home as we walked back to our empty house.

The birth of the twins did not make me forget Jake but my life became much busier.  My grief for Jake became a part of me and helped me to (hopefully) be a better mother to the twins.

The morning after Sawyer died our house was not empty.  The twins were home waiting for us to take care of them.  I cannot compare Sawyer’s death and Jake’s death at all.  However, after Sawyer died I had to get myself together and take care of the twins.  I cried as I changed their diapers, fed them and put them to bed but I did it.

The twins have no idea how grateful I am they were born and are alive.  I tell them all the time how much I love them and how lucky I am to be their mom but I do not have the words to express how important they are to me.  I hope they do not feel the weight of my world on their little legs.

Happy Birthday!!

 

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