On June 6th, 1997 my husband and I welcomed our first son, Nathaniel, into the world . Weighing in at a healthy 9 pounds 1 oz he passed his Apgar, had his little feet "printed” and was sent home with the doctor's blessing.

However, beneath the surface of what seemed perfect health, a frightening secret was lurking.

For the first two weeks of his life Nathan cried incessantly. (As first time parents we were assured that existing on 2-3 hours of sleep a day was normal). He also began to spit up every time I fed him.

Nathan's pediatrician diagnosed colic but, to our dismay, the medications for the condition only made things worse.

By the middle of June it was clear something was very wrong. Nathan had lost weight instead of gaining and he had literally stopped eating.

Nearly a month after his birth he was admitted to Nationwide Children's Hospital in Columbus, Ohio for "Failure to Thrive".

For two days Nathan underwent a bevy of tests for what was perceived as Gastric Intestinal related problems. On the third day an attending nurse noticed something disturbing. Nathaniel's breathing was rapid and labored. She notified a doctor and a chest x-ray was ordered. What the x-ray uncovered shocked everyone.

Nathan's heart was grossly swollen and devastatingly malformed.

Ultrasound revealed what should have been seen by Eco-cardiogram in utero. Not one, not two, but Three congenital defects impaired the functioning of Nathan's heart and threatened his very life.

Between the top two chambers of his heart was a small hole (often referred to as a PFO) Between his lower two chambers there was a hole so large it was as though the two chambers were actually one.(a huge VSD or Ventricular septal defect ) But most disturbing of all was that Nathan's aortic arch was "interrupted"; It literally narrowed off to a tiny point through which only a trickle of oxygenated blood could flow to the lower half of his body.

The doctor's were flabbergasted. How could this child still be alive? How did he survive this long? ( We know it was God) Nathaniel was rushed into surgery the next morning. The two holes were patched with Gortex and the Aortic Arch was reconstructed using donor tissue . It was a long, grueling surgery. Near the end of the operation the attending nurse came to us in the waiting room. I knew from the look in her eyes she was about to tell us something no parent want's to hear;

"I am sorry. We cannot get Nathaniel off the Bypass machine. It does not look good. "

We fell to our knees and begged God to intervene.

Ten minutes later the nurse returned, grim, but with hope. Nathan was off the bypass machine but in very grave condition....

We rejoiced that he was still alive.

Later that night, Nathaniel's condition became so unstable we were given the "option" to allow him to be placed on ECMO (very similar to a Bypass machine but used for days or weeks at a time instead of during surgery)

http://www.driscollchildrens.org/DCHWEB/AboutDriscoll/content/ECMOForPatientsParents.asp

The “other option” was unthinkable. We chose ECMO. We chose hope.

During the ECMO surgery, as cannulas were threaded through his carotid artery into his heart, one of Nathan's tiny lungs collapsed. We faced another meeting with the doctors as they told us he was alive but "very critical".

Ruben and I began to visit the hospital's prayer chapel every morning. We spent hours hovering over his incredibly still body (He was medically paralyzed so he could not disturb the tubes and machines lying like a web all around him)  Softly, I sang Nathan all the hymns I had learned growing up and diligently watched all the beeping, clicking machines that kept his little body alive.

Twice within that month the doctors attempted to take Nathan off ECMO but as soon as they would begin his stats would plummet; his blood pressure falling to a deadly low.

We were told to prepare for the inevitable. 

Would we like a lock of his hair? A picture?

The nurse took a picture while I lay my hand on Nathan's head. Softly I whispered

"Please, God..."

I had no more words....

On the darkest night since our world was turned upside down I found myself, once again, in the hospital prayer chapel. Ruben and I had just been told Nathan would be removed from life support the next day... no matter what.

I sobbed. I was so very tired.

" God," I said. "I surrender. Though it destroy me, whatever is your will I accept it. But please don't allow this to drag on anymore. I can't bear it."

At that moment, in my head, I heard a gentle voice whisper;

"Even now He works miracles."

Peace suddenly engulfed me.

I left the prayer chapel and headed for the ICU not knowing what I would find.

Honestly, there was no beam of great light from heaven above. Nathaniel's stats were not soaring into perfection... and yet, as I gazed upon him I saw clearly; There was a definite glow about his normally bluish hue. His blood pressure Was up by three points. He just looked ...healthier.

I questioned the nurse on duty.

“Does he look a bit better than he did an hour ago?”

She agreed....

From that moment on the miracle continued.

By dawn the next day Nathaniel's stats had climbed high enough the doctors were encouraged and gave him a couple more days to “improve” before taking him off the ECMO indefinitely.

Two days later Nathan came off life support with no complications. Ruben and I held his little body in our arms for the first time in two months. (We could not pick him up during all that time because he was connected to so many tubes and wires.) Each day Nathaniel improved more and more.

An ICU nurse who had tended him during his gravest moments came to see him and expressed her surprise.

“Truthfully, I did not think he would still be here. He truly is a miracle.”

A month later we left Children's Hospital; our rapidly improving son in his car seat, a diaper bag filled with at least 7 different medications and the paraphernalia for a feeding tube. As we pulled away from the hospital complex (and the Ronald McDonald house we had called home for the past few months) I noted how surreal it seemed to be going home after such a long journey.

But God, ever faithful, remained with us..

In only two months Nathan was weened off All his medications (including his heart meds!) The feeding tube was removed (he made up for lost time and weight by eating every two hours!) and he was on target in his motor skills development.

When most people look at Nathan today, (even the people that know him, play with him, teach and talk to him) they do not see the struggle he faced as a baby. They rarely see the deep scar that graces his chest . They only see the intelligent, healthy, and active boy who loves life and is truly (as his name means) “A gift from God”.

For His everlasting mercy ; All praise to the Lord.

-Melinda L. Clark