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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  1. Lanie,
    I think it is the unanswered questions that drive our grief even harder into our hearts. The “IF’S”. Or as my grief therapist says, The shoulda, coulda, woulda’s. Blessings to you, all mom’s and all mourners. I admire you and your strength in trying to help other’s in working for prevention.


  2. What a beautiful thought it is to hope that your pain could help avoid future tragedies. You are incredible Lanie.

  3. We attribute Kaiya’s death to SIDS because it still remains “undetermined”, however there so many things that make me think her case is not “typical SIDS.” Mostly I have a very strong “mommy instinct” feeling that it was her heart. The doctors all tell me her heart was normal and the autopsy showed nothing abnormal with her at all. I just really think her heart stopped first, and that is what caused her death. If it was an arythmia it would not be seen on autopsy. We have no other answer, so we just call it SIDS, becaused “Undetermined” sounds even worse to me. Thank you for sharing your story.

  4. Sending you so much love. We have the autopsy that says CHD, but still aren’t exactly positive what CHD and what exactly happened. Thank you so much for sharing Cora’s Story and working to make sure this never happens again. Sawyer is going to be a huge part of that. Through the work we’re all doing.

  5. It’s amazing how much you’ve learned through this terrible experience. What you’ve learned, and what you’ve shared (and continue sharing) will certainly help someone down the line, I’m sure of that.

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