Hats & Hope?

September 20, 2011 at 11:38 pm | Posted in Grief | 11 Comments
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I had been hoping for an answer to why Sawyer died.  And while I was hoping, I wanted an answer to why Jake died.  There is no answer today.  There might not be an answer tomorrow.  Or ever.  I was hoping that I could fight against whatever caused the deaths of our babies.  I could raise awareness.  Help other families.  Now I do not know what I am fighting against.

Perhaps in the case of Jake it is prematurity and hydrops that I need to fight.  Maybe Sawyer will officially be another SIUDS statistic and I can try to figure out what that means.  It seems hard to fight against the unknnown.

I have readjusted what I hope for in the past.  It is once again time for me to change my hopes.  I have to stop hoping for an answer.

I will continue to be so thankful for everything I do have.

I will continue to be inspired by parents who have turned their grief into action:

The Ronan Thompson Foundation
Layla Grace Foundation 
Friends of Maddie
Hailey’s Hope Foundation
Simon’s Fund
Cora’s Hopes and Dreams

I hope to have the strength one day to also turn my grief into action.  Writing and speaking about Jake and Sawyer is a step in the right direction.  I just have to figure out what is next.  Any suggestions?

Unknown & Unchanged

September 8, 2011 at 9:24 pm | Posted in Grief, mourning | 17 Comments
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Nothing has changed.  If you had spoken to me (or I had written) yesterday everything would basically be the same.  Jake and Sawyer died.  The twins are healthy.  However, today we received an email from Sawyer’s pathologist.  We have waited for over a year for the results of the Mayo clinic study which Sawyer is a part of.  The study tests for cardiac channelopathies, such as long QT.

Sawyer’s doctor wrote, “none of the genetic-DNA mutations that are known to be associated with/responsible for abnormal heart rhythms has been identified in Sawyer.”

I always knew the study might be inconclusive.  However, I hoped that there would be some sort of medical answer.  An answer that could somehow help me rationalize and comprehend Sawyer’s death.  If there was some known medical condition we could have the twins tested for it.  As of now there is no answer.  Maybe there never will be.  No one ever promised that life would make sense.

The cause of Sawyer’s death is unknown.  The facts are the same as they were yesterday.  Nothing has changed or has it?

Hope & Heart Ache

May 16, 2011 at 11:36 pm | Posted in CHD, Grief, parents, silver lining, transient tachypnea | 5 Comments
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We still do not know the cause of Sawyer’s death.  His heart just stopped.  He is currently in a study at the Mayo Clinic for Long QT.   His autopsy did not determine that it was SIDS.  No matter what the results of the study conclude I know that Sawyer will still be dead.  However, I hope that his death will help to provide the research which could prevent other children from dying. 

According to the Children’s Heart Foundation, “Congenital Heart Defects (CHDs) are the most common birth defect in America, affecting approximately one in one hundred, or 40,000 newborns each year. CHDs are responsible for one-third of all birth defect-related deaths and sadly 20 percent of children who make it through birth will not survive past their first birthday.” 

CHD’s can be detected by Echocardiogram, Cardiac catheterization, Chest X-Ray, Electrocardiogram (ECG/EKG), Magnetic Resonance Imaging (MRI) or other diagnostic testing.  Newborns do not routinely have any of these exams.  Some CHDs can be detected pre-birth by a Level II ultrasound or by a fetal echocardiogram. 

Sawyer had a Level II ultrasound and a fetal echocardiogram.  All appeared to be perfectly normal.  He was also in the NICU briefly because of transient tachypnea (extra fluid in the baby’s lungs which would normally be squeezed out when the baby goes through the birth canal – c-section babies do not have the benefit of the fluid being squeezed out. )

In the NICU Sawyer’s heart and pulse oxygen levels were monitored.  Again, all appeared normal.  He did not have an EKG or an Echocardiogram.  If he had, would anything have been detected?  We will never know.

What I do know is that I wish there was more screening for newborns.  I hope that organizations like Simon’s Fund succeed in their mission “To save a child’s life . . . . and then another, by raising awareness about heart conditions that lead to sudden cardiac arrest and death.”

I hope that Cora’s Story results in a pulse oximetry test on every baby.  I want to help Aaron’s mom, Cora’s mom, Logan’s mom and all the other parents of CHD children to spread awareness and hope.  Sawyer’s death may not have been caused by a CHD but it did make me realize how many children do die because of heart defects.  Please ask your child or grandchild’s pediatrician if they provide heart screening. 

“In the sharing of our losses, our hearts grow stronger.”  Kirsti A. Dyer, MD, MS

 

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