Unmapped Territory: Evelyn & Ethan’s CHD Journey

Unmapped Territory: Evelyn & Ethan’s CHD Journey


Evelyn & Ethan square graphic FB SQ Graphic Evelyn & Ethan Heart heart ero Evelyn

Heart Heroe Ethan










written by Missy McDermott, Ethan & Evelyn’s mom

When Keith and I married seven years ago in July of 2009, we had a path mapped out in our minds of what we’d be adventuring through together as husband and wife and as future parents.  We never imagined what kind of journey these last six years would have taken us on.

After a few months of being married, we were ecstatically surprised to learn that we had become pregnant!  We decided to make the gender of our baby a surprise to the very end, and the pregnancy went as smoothly as expected.  We experienced all the lovely delights that any mother-to-be and father-to-be could indulge in!  Suddenly, at 36 weeks and three days, I began serious contractions and was in labor before I knew it!  We welcomed a baby girl, whom we named Evelyn Ann, on June 5, 2010.  She was 5 pounds, 6 ounces and 19 inches long.

She was simply a joy for us with her sweetness and her love.

Our first night as parents was like a dream.  Everything seemed to be going so well.  Evelyn slept overnight in the nursery so she could get the attention she needed and we could get the much needed rest from such an exhausting day.   The next day became a bit harder.  She wasn’t eating like she needed to be.  Her body temperature levels weren’t exactly where they needed to be either.  By the early evening hours, it was decided by our doctor and nurses that she needed to be transferred to the NICU for further observation and care.  It was very disheartening to receive this news, especially as a new mom and a new dad.  We understood that this was best for her, but again, we didn’t understand why it was happening to our new family.

Evelyn spent the next 11 days in the NICU.  It was a struggle to know that we couldn’t take her home in the normal time frame that new parents get to do.  I was lucky enough to have the summer off as I am a teacher.  I was able to spend my days and nights with her at the hospital while she spent her time in an incubator and recovered from her high levels of jaundice.  After we were finally discharged from the hospital, we took her home without the realization that our path with more doctors’ visits would still continue through the next couple of years.  We experienced torticollis, which required the need for her to wear a helmet for several months, and speech delays that required in-home care with special education teachers from our school district before she attended preschool at age 3.

Throughout our progress with Evelyn’s physical and mental growth, we shared so many wonderful moments of love and laughter as our family of three.  We later learned in the fall of 2012 that we were pregnant again.  Such exciting news for us that we were going to be parents again!  This time around, we were a little more apprehensive during our prenatal doctor’s visits, and we were asking more questions as we wanted to make sure we could try to carry this baby, another surprise in gender for us, to full term.  Unfortunately, tough news was just around the corner.

At my 22-week ultrasound, our baby’s heart was detected as somewhat misshapen.  Our prenatal doctor wasn’t quite sure what she was looking at, but she knew something was wrong.  She sent us to a specialist to have a fetal echocardiography completed for a further result.  We then learned from our specialist that he suspected that our baby had a Coarctation of the Aorta.  He was 95% sure, but he would only know for sure when our baby was born.  We went through the rest of our pregnancy with baby #2 knowing that we had a congenital heart defect to attend to when he or she was born.  Again, this is not what we were expecting as parents-to-be again, and it was hard to understand why this was happening to our little family.

On the lucky side of this CHD, we do live in Omaha, Nebraska, where we have access to Children’s Hospital & Medical Center.  Before the birth of our baby, we were able to meet with our child’s surgeon, Dr. Ibrahim Abdullah, to discuss the care plan for our baby’s heart and health.  Only days later did we welcome our second child, our son Ethan James on May 27, 2013.  He weighed 6 pounds, 3 ounces and was 19 inches long.  He was such a little stud!  Unfortunately due to his condition, I only spent about 20 minutes with him on his day of birth.  He was born at Bergan Mercy Hospital, quickly sent to the NICU, and then was transported to Children’s Hospital & Medical Center in less than two hours after his birth.  Keith was able to be with him as Ethan was settled into his room in the NICU at Children’s as I recovered from his delivery back at Bergan Mercy.  It was a joyous yet sad day that we experienced all at once.

After settling in the NICU at Children’s, Ethan spent his first week of life hooked up to machines and a feeding bag that gave him what he needed nutritionally as he was observed by several doctors to discuss and decide what to do about his heart defect.  His little heart was putting up quite the fight as he stumped his doctors with how well he was doing and as the daily echocardiograms that were done were not showing results for immediate repair.  He was almost discharged from the hospital at five days old, but then an unexpected pressure was pushing on a wall on the inside of his heart.  After a cardiac catheterization (or heart cath) was completed, Dr. Abdullah clearly saw his coarctation and knew that surgery was necessary.  At one week old on June 3, 2013, Ethan was taken in for open-heart surgery.

Never in our lives did we think that one of our children would have to go through such a procedure like this one.  After five grueling hours of waiting during such a complicated surgery, we were so relieved to hear that our son came out of his open-heart surgery with flying colors.  Dr. Abdullah told us that his little heart beat so strongly after coming off of the heart-lung machine.  Ethan spent an additional five days in the PICU to have his needs of post-surgery monitored.  He was discharged at 12 days old, just in time for his sister’s third birthday party.  Our family of four was finally at home together.  We felt so blessed that everything with Ethan’s surgery went as smoothly as it possibly could have.

Now that our son’s surgery was completed and Evelyn’s educational needs were being addressed, we felt that the rocky roads were behind us.  The next year was a blissful one.  Everything was looking up for us until we had our kids’ yearly checkups in June of 2014.  Ethan’s one-year checkup was great.  His growth was on point!  Evelyn, however, was a bit of a different story.  Our pediatrician went through his normal routine of questions and procedures at her four-year checkup.  When he listened to her heart, he detected a murmur.  It was enough of one that he sent us back to Children’s Hospital & Medical Center.  We met with Ethan’s cardiologist, Dr. Robert Spicer, to see what was going on.  After listening to her heart, he immediately diagnosed her with an Atrial Septal Defect, which was confirmed with an echocardiogram.  Whoa, how could this be happening again?  Another child with another congenital heart defect?  Once everything seemed to be in a good place, things just felt like they were falling apart again.  It was tough news to hear.

In the next few months, we met with Dr. Abdullah to discuss another care plan for now our other child.  Due to Evelyn’s size of her heart defect, Evelyn had to also undergo open-heart surgery.  It was another realization that hit both Keith and me very hard.  To know that both of our children would have to go through such similar, complex surgeries is something that was just too difficult to understand, but as two parents who know what is best for our child, we were ready for our next obstacle to overcome.  On December 4, 2014, Evelyn went to Children’s to have her surgery completed.  In three hours of more grueling waiting, Evelyn came out of her surgery with remarkable results.  We were both so grateful for another successful surgery performed by Dr. Abdullah.  And to add to such a successful surgery, in just four short days, Evelyn was discharged from the hospital.  She bounced back so quickly from her open-heart surgery, and it made this moment in our lives that much easier to bear.

Nowadays, Keith and I are continuing to monitor our children’s progress with their health.  Both Ethan and Evelyn’s hearts are doing very well.  Our most recent heart checkup with Dr. Spicer was at the end of July of last year.  Both of our kids had great feedback.  In fact, we don’t have another heart checkup for both of them for another year!

We are also continuing to monitor their educational needs.  Ethan is on a normal path of a three-year-old with already knowing his letters, his colors, and putting longer sentences together.  Evelyn, on the other hand, continues to work with special education teachers with her speech development.  She does have trouble with her language skills and even some gross motor skills with coordination and balance.  She’s working hard in her kindergarten class, and boy, do they work her hard too!

These past six years have definitely been more of a challenge than Keith and I ever imagined when we first learned that we were pregnant with our first child. We know that we’ve been lucky with the successful results from both of our children’s open heart surgeries, and both Evelyn and Ethan are now fortunate to be able to live such healthier lives.  We are also so blessed for their Heart Hero Capes, the outreach of services, and the fun family functions that Heart Heroes has done to bring out the best in our kids.

The journey has been an unexpected one, but we’ve learned to make the most of what we are given and to always keep love and gratitude in our hearts.

Posted in: Advocacy, Awareness, CHD, Heart Hero of the Month, Heart Heroes

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