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.


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.

Sawyer’s Aunt

April 10, 2012 at 10:26 pm | Posted in Death, Grief | 6 Comments
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On my last post, The Good Cook commented that “It truly does take a village to mourn one lost love.”. We are not alone in our grief. Other family members mourn. Friends mourn. Sawyer and Jake are loved and remembered by many.

Not long after he died, one of Sawyer’s amazing aunts wrote the post below:

This is incredibly sad for me to write.  I hope writing about it helps.

My brother’s baby stopped breathing and died in his sleep, almost two weeks ago.

We were all in terrible shock. Sawyer was a sweet, beautiful little thing, only a month-and-a-half old. We’d just Skyped with my brother and sister-in-law and watched him sleeping contently in his mother’s arms. I’d had the chance to hold him myself over Thanksgiving. Impossible.

And not fair. Especially not for my brother and his wife, who’d already lost their first baby due to medical complications. They then went on to have twins–a boy and a girl–now two-and-a-half–both adorable. But now this.  I can’t imagine having to go through the death of a child once, let alone twice.

I flew as quickly as I could to their place, hoping to support them in any way possible. When I arrived, family was already there helping. Others would arrive soon. There was also a great circle of friends who stopped by to lend a hand and offer condolences.

A neighbor from down the street, came to drop off food and check in on my sister-in-law and brother. She told me she had lost her own daughter to SIDS. She showed me a pendant she wears around her neck always reminding her of her daughter. I was told shocking stories about others who too, had lost children.

I asked her how she was able to handle the grief. She explained she already had other children at the time, and she had to go on living for them. I thought of my brother’s twins and was hopeful that my brother and sister-in-law would be able to do the same.

My niece had been asking where her baby brother had gone. My nephew would run up to his mother, stroke her arm, hug her and say, “I’m so proud of you, Mommy.” She would thank him and try to hold back the tears. Both the twins knew things were out of sorts, and that their little brother wouldn’t be living with them anymore, but at this age, they didn’t fully understand what had happened. A small blessing for now.

We all asked WHY? Why him? Why them? Why now? I thought of what amazing parents they both are. In addition to making sure their twins are well-fed, happy and educated (as educated as 2-year-olds can be) they keep their kids so well protected that I’ve had to ask them to help me get into the bathroom, or turn on the stove because of all the child-proofing they’ve done. It’s clear there’s no lack of love or protection for the children in their house. But no matter how many times we asked why, there were no clear answers, and there likely wouldn’t be for quite a while.

When we finally attended the funeral, on a chilly Atlanta morning, the rabbi conducting the service brought up a question I’m fairly certain none of us had asked.

“As adults we ask, ‘Why?’…What we need to ask is, ‘When?’ “

Ask when? When what?

“Ask WHEN Sawyer is…WHEN is Sawyer,” he said.

I didn’t understand what he meant, but he went on to explain.

Sawyer is when…we’re spending time with family. He’s when…we’re out for a walk on the beach. He’s when…we’re at a ballgame. A bit of him is with us when…we are. Simple.

I understood what he meant.  It brought a small measure of peace.

The sentiment will stay with me always. So will a bit of Sawyer. And I’ll never forget…when.


October 2, 2011 at 11:58 pm | Posted in Grief | 10 Comments
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Along with being Breast Cancer Awareness month, October is also Pregnancy and Infant Loss Month.  Did you know that 2,000 women/men lose their babies in 1 day (and that is in the United States alone)?

Myths vs. the truth about pregnancy/infant loss:

Myth: Losing a baby is very uncommon; it won’t happen to me or someone I know.


  • 25-50% of all pregnancies end in miscarriage (
  • Stillbirths (the death of a baby after 20 weeks gestation) occur in one in every 160 pregnancies–about 60 stillborn babies every single day (March of Dimes).
  • Each year, in the US alone, about 20,000 babies die in their first month of life, many after being born prematurely (March of Dimes).
  • SIDS is the leading cause of death among infants ages 1 month to 1 year.


Myth: Pregnancy/infant loss is something that happens to older moms, overweight moms, or moms with health issues.

Truth: “Baby loss” does not discriminate. Often, it’s young, perfectly healthy women who experience the loss of a baby. The Faces of Loss are of ALL kinds of women–young, old, black, white, thin, obese–pregnancy/infant loss can strike anyone.


Myth: Miscarriages and Stillbirths are usually caused by a lack of prenatal care or something else the mother did during her pregnancy.


  • Almost 100% of miscarriages could not have been prevented, with the majority being caused by chromosomal abnormalities.
  • 25% of Stillbirths are caused by placental problems; 15% are caused by an infection; 2-4% are caused by umbilical cord problems, and 50% have no known cause of death whatsoever. While there are risk factors to be aware of (smoking, for instance), the overwhelming majority of stillbirths are completely out of the mother’s control.


Myth: A woman who has just lost a baby wants to forget it ever happened and move on with her life.

Truth: While this may be true for some, many are dying to talk about the child they lost, especially if it was a late-term pregnancy loss or infant loss. The chance to talk freely about their baby(ies), without feeling like they are making everyone uncomfortable, is something many, many women who have lost a baby wish for.

The information above is from I am the FaceFaces of Loss, Faces of Hope tries to put real stories and faces with all of these statistics.

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!!


SUIDS, SIDS & Sawyer

May 20, 2011 at 8:59 am | Posted in CHD, Grief | 8 Comments
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Before January of 2010 I was blissfully unaware that the term SUIDS (Sudden Unexplained Infant Death Syndrome) even existed.  I had heard of SIDS but my experience with it was limited to watching stories about fictional families in Lifetime movies or reading about real, unknown families in newspaper articles. 

Until December of 2006,  SIDS did not exist in my real world.  Our next door neighbor called to let us know that another neighbor’s baby had died.  It was determined the cause of death was SIDS.  Evan and I went to talk to the parents.  Their 2 toddler boys were running around in circles as we shared Jake’s story and they told us about their baby. 

Our neighbor’s baby was full term.  She was 3 months old.  She had been to the pediatrician the day before.   She had been taking a nap.  She did not wake up.  I did not know that Jake would die.  However, I knew he was very premature and he had hydrops.  I knew that he was in the NICU and there were complications.  Our neighbor thought she was waking up her baby to take her to her first Christmas party.

December of  2009, Sawyer did not wake up. 

It was determined that Sawyer’s cause of death was not SIDS because of the coarctation of his aorta.  In order for SIDS to be determined the cause of death the baby must be 100% anatomically correct.  The coarctation while it was not narrow enough to cause death, it did lead to the possibility that he had cardiac channelopathies. 

I know that I am not the best at explaining these medical terms.  The following is a better explanation from the CDC:

Sudden unexpected infant deaths are defined as deaths in infants less than 1 year of age that occur suddenly and unexpectedly, and whose and cause of death are not immediately obvious prior to investigation.

SUID posible causes: Poisining or overdose, SIDS, Accidental suffication, Unknown, Infections, Inborn errors of metabolism, Cardiac channelopathies.Each year in the United States, more than 4,500 infants die suddenly of no immediately, obvious cause. Half of these Sudden Unexpected Infant Deaths (SUID) are due to Sudden Infant Death Syndrome (SIDS), the leading cause of SUID and of all deaths among infants aged 1–12 months.

Sudden Infant Death Syndrome (SIDS)

Sudden Infant Death Syndrome (SIDS) is defined as the sudden death of an infant less than 1 year of age that cannot be explained after a thorough investigation is conducted, including a complete autopsy, examination of the death scene, and review of the clinical history.

SIDS is the leading cause of death among infants aged 1–12 months, and is the third leading cause overall of infant mortality in the United States

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