Cora’s Story & Compromise

June 22, 2012 at 2:02 pm | Posted in CHD, Grief, Love | 7 Comments
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Cora’s Story:

Cora was a full term healthy baby girl born on November 30.   The pregnancy, birth and delivery were all uneventful.  Cora’s Apgars were both 9s.  She died on December 6 while breastfeeding in her mother’s arms.  After her death, Cora was diagnosed with a congenital heart defect (CHD).

Her mother, Kristine, created a non-profit which is spreading CHD research, resources and information in memory of Cora.  CHD is actually the most common birth defect – it occurs in 1 out of 100 births.  There is no cure but early detection is sometimes possible with a pulse ox screening.  Screenings are a low-cost, noninvasive way to potentially detect CHD.

Cora’s mom is also advocating for every baby to receive a heart screening at birth.  Cora might not physically be with us now but as her mom writes so eloquently, “Cora is saving lives now.”

Cora and Sawyer were born in the same month of the same year.  They both died that year too.  Sawyer’s preliminary reports also indicated an issue with his heart.  We still do not know exactly what happened to Sawyer but I know that I wish he had received a heart screening at birth.  Thank you Kristine for sharing Cora with the world.  She is truly saving lives.

Compromise:

She really wanted to go swim in the pool.  He really wanted to play pretend at home.  After a lot of pleading, crying and whining they finally reached a happy compromise.

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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

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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