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Our Heart Story



It was the end of January 1992. A brand new year. I was 26 years old, had been married more than five years, had a good job, a new home, a beautiful and healthy 10 month old daughter, and a positive pregnancy test. Oops… How would I ever manage it all with two little kids so close together?

Fast forward to late May. At 17 weeks along, I was hoping the ultrasound would reveal the sex of this new baby. Multiple ultrasounds were not allowed by insurance companies back then, so this would be our only chance. It never crossed my mind to hope for health. Sad, but true. I just assumed health. Weren't all babies born healthy?

The ultrasound tech wasn't sure, but she thought the baby was a girl. I admit, I was disappointed for a minute. My gut told me ‘boy’. In the end, the tech had missed the vital and telling anatomy….it was a boy! She also missed his ‘half a heart’. (In her defense, it was 1992. Ultrasounds were nothing like they are now and heart defects are still missed.)

On October 26, 1992, we welcomed our first son. Our two nurses gushed over his cuteness. We cooed over his soft, kitten-like cry. As one continued to gush, the other applied the oxygen mask again. And again. She remained pleasant, but became more professional and a little more distant. Of course, I didn’t realize that at the time. That realization came years later.

On Oct 27th, our pediatrician mentioned that she heard a heart murmur. She explained that it was common, but she wanted a heart specialist to check it out before we left the hospital. 

Sure. No problem. 

What’s one more day in the hospital? I had not been released, so….no big deal.

On Oct 28th, we sat with the cardiologist as he drew a normal heart on a notepad and then, our son’s deformed heart.  They looked nothing alike.  The doctor described what could possibly be done, adding that our baby’s heart was the most complicated anomaly he had ever encountered:  Tricuspid Atresia, D-Transposition of the Great Arteries, Hypoplastic Right Heart (single ventricle), Atrial Septal Defect, Ventricular Septal Defect, and Coarctation of Aorta.  Complete Heart Block was added at 3 weeks of age.

One of the very few photos I have of Clint.

We were so shocked, so dumb-founded.  We didn’t even realize the doctor was talking about surgery, or rather, multiple surgeries, to give our son a fighting chance.  We didn’t realize that he had begun his journey to death the very moment he was born.  “You mean….surgery?”  “Yes. Yes, once he is stable.  He has been moved to NICU.”

NICU.  Tubes and wires.  I know it sounds silly, but it wasn’t until the moment I walked into the NICU that it dawned on me---I was going home alone.

The following nine weeks were the longest, most emotional, most difficult days of my life. Watching your tiny baby endure surgeries, intubations, cath procedures, pokes, infections, etc. is, well... physically and mentally excruciatingly painful.  The last six weeks of his life were total Hell. 

In the end, we had to make the choice to remove his life support.  Infection ravaged his little body to the point of no return.  He passed immediately, giving us a bit of comfort that we had indeed made the right decision.  I left the hospital that night with one weight lifted and another weighing heavily.  I closed the door on Congenital Heart Disease when I walked out that night.

I was done with CHD.  

Forever.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thirteen years and three boys later, in April 2005, we were shocked to learn that another baby was on the way.  I was almost forty, for Pete’s sake!  Our youngest son was almost five years old!  Nevertheless, we were excited when we saw that tiny baby’s heart beating on the ultrasound at 9 weeks along.  What a Christmas we would have with a new baby in the house.  

Because of my ‘Advanced Maternal Age’ I was concerned about Downs Syndrome.  I just had a gut feeling that something was wrong.  I never thought about CHD, oddly, probably because we had three healthy boys after Clint and we were told that his heart problems were spontaneous--his CHD just happened.

So, because of my age and our CHD history, I went to a fetal specialist for a level 2 ultrasound.  (Truthfully, I went for the same testing with all of my boys to check their hearts.)  

On August 2nd, the day before my 40th birthday, I watched the ultrasound screen hoping my fears would be proven wrong--praying my baby boy would be healthy.

The ultrasound went on for what seemed like forever.  The tech knew our CHD history and was thoroughly checking his heart.  After some time had passed, I knew.  I just knew.  She didn’t say anything.  She didn’t have to.  Finally, she said she was having trouble getting a particular view and wanted to get a senior tech.

“Sure.”

Then she offered to go outside and find my husband who had stepped out to make some phone calls.

“Nah.  I can handle it.”

Two techs, two doctors, and I crowded into that exam room.  They talked around me, brainstorming my son’s exact CHD and the possibility of chromosomal defects.  Organs were misplaced or missing entirely.  The news was grim and I was urged to terminate the pregnancy.  We sobbed in the parking lot, unable to see any outcome other than death.

But God had a different plan.

We had many doctor visits over the remaining months.  We had to plan delivery and care away from home.  At our last ultrasound on December 2nd before our planned induction on December 5th, the perinatologist held my hand in both of his and with a grim face, wished me the very best.  

I was scared.

Our plan was clear….induction and birth, then rush the blue baby to NICU for immediate support.  Surgery would happen during the first week, and then we would go from there.

Things didn’t go as planned.

Eli was born pink and screaming.  He was rushed to NICU (I did get a quick peek) but needed no support.  No meds, no ventilator, nothing.  Best of all….no surgery. We took him home on day 4 of life.  His diagnosis:  Double Outlet Right Ventricle, L-Transposition of the Great Arteries, Hypoplastic morphological left ventricle, Atrial Septal Defect, Ventricular Septal Defect, pulmonary stenosis, sub pulmonary stenosis, Ebstein-like Tricuspid valve with regurgitation.  

WPW was added at 3 months, as SVT became our reality, along with ER trips, ICU stays, electrocardioversion, and EP caths filled the days of his infancy.  

Eli  remained on a ‘wait and see’ path after his VSD (ventricular septal defect) spontaneously closed on its own right before his first scheduled open heart surgery--the Rastelli procedure.  That surgery was cancelled and the ‘wait and see’ continued.

In February 2009, Eli had open heart surgery to address his ASD (atrial septal defect), sub pulmonary obstruction, and hypoplasia.  He had a 1 ½  ventricle palliative procedure.  He was 3 years old.  Eli sees cardiology every six months.  






2 months after OHS




You can follow Eli's journey at Carepages:  Elischaffer

Six months before Eli’s heart was repaired, he was diagnosed with Autism.  





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