July 14, 2008

19 years ago today was one of the most nail biting, sweat-it-out, dangerous, scary and yet, miraculous days of my life.

My son, Ryan, was born.

Now, one might be thinking “ok, ALL moms feel that way when a child comes into the world ~ especially child #1.”

Granted.

But this time around it was something more - if that is possible. It was the very first time in my life I was witness to the deep power of faith and miracles far beyond my imagination.

The miracles began the first day of summer on that year. To that date, I had experienced nothing short of a perfect pregnancy ~ one that I cherished, honored and took very good care of. I joke to this day how I would eat only perfect food, exercise away from big roads so I did not inhale exhaust, get plenty of sleep and exercise … EVERYTHING was for the hope of that healthy baby.

On the first day of summer, June 21, 1989, I had taken my usual walk outdoors and I came inside to lie down for a bit. It was during this down time when the baby (not yet known to be a boy - we were going to wait and be surprised) would do the rock and roll over and make a play date with my innerds! Today was different. I did not feel him move. I pushed on the belly and tried to invoke a simple kick … nothing. I scoured my “What to Expect when you’re expecting” book looking for some kind of reassurance. Nothing. I called my friend, Suzanne, and asked her what to do. She told me not to worry. The baby was probably just resting. I did the same for about an hour. Still no movement. I called the doctor and he said to come in. They did an ultrasound. Said the baby was fine and sent me on my way. But as I was leaving his office, hand literally on the door to go, he suggested we do a non-stress test on the baby’s heart just to be sure.

That last minute call on his part will go down in history as one of the most significant saves of my life.

Ryan’s heart rate in utero was over 250 beats per minute. A normal baby heart beats around 120. Level 2 heart studies showed his heart was in serious distress. Not knowng how long it had been beating so rapidly, the doctors could only see it was surrounded by fluid and seriously compromised. I had 8 weeks to go. He was small and very, very sick. A decision had to be made - deliver him with undeveloped lungs and hope for the best OR admit me to high risk unit of a major hospital and figure out what to do.

They opted for admission.

I was taken by ambulance to the Children’s Hospital of Philadephia where almost 20 years ago, they started doing what they called Fetal Echos, a procedure that allowed them to do an in depth study of a baby’s heart while in the mother. We were given devastating news - Ryan’s heart was deformed and all of his organs were in the wrong places. His liver was on the wrong side. He had 2 left lungs, multiple spleens and a heart arrythmia that was causing his heart to beat twice as fast as normal. The doctors called across the world trying to alert colleagues on our condition and seek some help. It came from California where a doctor specializing in high trauma in utero suggested the doctors give me toxic doses of a heart strengthening drug called Digoxin to cross the placenta and slow down Ryan’s heart. It ultimately worked about a week into the process, but it made me very sick. My heart would beat so slow that I often was afraid to fall asleep for fear that I would not wake up. I remember unplugging my monitors at least once a day to see if anyone came running. They did!

They performed an amniocentisis to see if Ryan would have Down’s Syndrome, as well. I waited a week for the news. THAT was not to be. We bought 3 weeks. I was alone that entire time, sharing my room with mother’s having high risk twins. I watched 5 of them come in and leave with two healthy babies each. I had no family out here and my husband at the time was in Toledo defending his master’s thesis.

On the night of July 13, 1989, Ryan took a turn for the worse and it was decided he would be born by C-section early the next day. They had warned me that he would be blue, very limp and unresponsive. He might not make it out of the day. Instead, he arrived pink, screaming and beautiful. I was allowed to see him for a second before he was rushed to the children’s hospital for what was to be immediate surgery to transpose his heart vessels. I was a mixed bag of joy and sorrow. Would I be able to hold him? Was this it for me as a mom? I was alone in a room on the maternity floor listening to the screaming babies in the nursery across the hall. There was no one to comfort me or to tell me it would be OK. I had no family here.

The phone call came and I learned that Ryan’s heart was in backwards and he would not need immediate surgery - on the heart, at least. The surgeon told me he needed surgery to untwist his intestines, one of the parts of this syndrome he was born with. He made it through. His heart was stable and beating normally and they advised that it might not beat erratically again.

I saw him 3 days later. I begged them to let me leave early. I had to ask the nurses in the ICU which baby was mine. I did not know my own child. I was not able to hold him. He was a tangle of wires and tubes and very sick. We spent months in that hospital because his heart rate DID start beating erratically.  I never went home. I sat in vigil in a rocking chair by his bed 24 hours a day, 7 days a week. I ate McDonalds french fries and diet coke. I watched kids come and go. I became close to many families. I grieved when children died. My incision did not heal properly and I would not know how bad it was until I was pregnant with Stephanie 3 years later and I ruptured unexpectedly.

We finally made it out for our first night at home 3 months later. Late that same night, a monitor alerted us to his rapidly beating heart and we were back in the hospital for weeks again.

And so the story of Ryan began … he is now a man, with a heart as bright and pure as sunshine. He appreciates life more than anyone I know. He is a gentle and kind soul, in some ways wise beyond his 19 years and in others, still very much a young child. I tell people he reminds me of the Forrest Gump movie character. He would give his life for anyone. He is slow on the draw, has no short term memory, but he tries so hard. Life is his gift. He has very few friends because he is so shy and not keen on the ways of today’s young people with their crazy lives, lack of responsibility and general apathy for the world (so he says). He is the first to put a $20 bill in a charity jar on a store counter and the last to leave Sunday mass. I am so proud to be his mother. It has been an amazing journey we have taken together - through 19 years of open heart and bowel surgeries and hundreds of heart emergencies. They STILL frighten me even though modern medicine can get his heart back to normal rhythm, mostly, with one shot of an IV drug. He is stable and planning his senior year in high school.

Today is his birthday and for the first time EVER he is alone. 3 hours away from me. NO mom. No dad. Spending a few days exploring a graphic arts program at a PA technical college. He is in an apartment. On his own. I am here … breathing slowly into a paper bag every hour or so … if my nails were not thick acrylics I would have bitten them all of. I have been pacing, waiting for the phone to ring. Packed to drive three hours RIGHT NOW if he needs me.

My precious heart baby has grown up - and his heart, a mess of artificial parts plumbed in life saving ways - grows with him.

Happy Birthday, Ryan! I will let you read this one day.

Love,

mom