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

 

Life with Sawyer

December 8, 2010 at 11:38 pm | Posted in silver lining, twins | 8 Comments
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Once Sawyer was home from the hospital the twins were fascinated him.   Meanwhile, Evan and I tried to figure out how to manage life with a newborn and 2 1/2-year-old twins.  

The moment Sawyer cried one of them would run to get his pacifier.  The twins would always make sure that he was covered with at least a blanket if not other things. . .


A very wise and close friend advised me and Evan that at our wedding we should stop every once in a while and just enjoy the moment.   I thought our wedding would go by very quickly and it did.   I did not think that our time with Sawyer would be so quick.   I wish I had stopped to just enjoy more moments with Sawyer.

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