Saturday, February 11, 2017

Day 11 - Sophia Sage Weik

I had only read about her... about a baby who was left behind because a family was told that she was terminal.  It was June of 2001.  Only 8 months earlier, we had brought home a baby from the same orphanage in Jiangsu Province.

Back then, we had Yahoo Groups for families with children from various orphanages from China.  The post was from someone in that travel group.  It said something terrible happened, a baby whose heart condition was not known until the medical exam in Guangzhou was sent back to the orphanage.  A baby who was lovingly named and dressed in pretty clothes and wheeled around in a stroller, who already had her passport to travel home... I could not even begin to comprehend what happened.  To come that close to being part of a family... And then an orphan once more and a dying one at that.

At the Consulate, the doctors told the family that she had severe heart disease and that she would not live long.  A family who had tragically lost a child a couple of years earlier due to a horrible accident.  I could not imagine making that choice.  So this woman who had been in the same travel group adopting her own daughter, posted that as a group, we needed to raise money that this baby could be put in foster care where she could have more individualized attention. 

All I could think was, why are we leaving her there to die?  I looked at my three year old and 18 month old daughters... What if it were one of them?  What if they had been left behind... my heart broke at the very thought.  This baby, whose only sin was to be born with a broken heart.

So I replied to the group asking why were we not bringing the baby here?  For surgery, for the love of a family for her potentially short life, for some type of hope?  This woman wrote back that I should call the agency and ask for their China Facilitator.  He apparently was one of the most connected people at the CCCWA.  If there was any hope for this child, this was "the man".

So being someone who knows everything and anything can happen when God decides to move mountains, I called the agency.  It led us on an eighteen month odyssey to bring hope to this child who needed a miracle.

It took a lot of time and intense negotiating on Mr. Gu's part, with the orphanage, the CCCWA, and officials in China to get her adoption file back in the system.  Because he was well respected and somewhat famous in China, he was given favor but it was clear that God was in the middle of this child's journey.  Not only did we need the file but we needed it to go to the original agency.  There wasn't a Shared List back then.  No file transfers.  No avenue to find out what agency had her file.  The file could sit at another agency for 3-6 months before going back to the CCCWA. 

In April of 2002, I was able to get medical reports and Echocardiogram images done after she was returned to the orphanage.  A friend who was a Pediatrician knew of a Pediatric Cardiologist who was raised in China and could translate the Mandarin in the file.  Armed with the file, I visited her office.  She looked at the films and said, "This baby only has a small ASD (Atrial Septic Defect) it may have already closed by now.  She is not terminal." I was elated.  Up until this point, I was fiercely advocating for her... Not even knowing if we would ever see her file.  I went as far as printing out her picture and taping it to a friend's door.  Countless phone calls.  A friend from my travel group had said yes, early on but we had heard nothing for months. 

I never thought we would adopt her.  I had 2 children 4 and under, and a husband who worked long hours, no family support, my friends all worked while I stayed home overwhelmed much of the time.  For much of that year, I was barely keeping it together, let alone adopt a medically fragile child.  For most of that year, we thought this child was terminal.  I prayed, God I know your word says, I can do all things through Christ who strengthens me... But not this... Not a dying child... My greatest fear is to lose a child.  Let's find someone else who can handle this...

In May of 2002, my friend Karen called on the phone.  Every year, Karen organized a fundraiser for The Amity Foundation, which helped fund surgeries for orphans in China.  This was the year that I was going to play a major role in the fundraiser, co-chairing with her.  She excitedly told me that she just received the photos and names of the 5 children we would be raising money for this year and that she had just forwarded them to me.  I opened the email, and looked at the first picture... my heart skipped a beat... There she was... older and thinner than the baby pictures that were sent to me.  But it was her!  The orphanage name was correct but she was listed as a boy... I could no longer hear Karen's voice on the phone... All I could hear was the Holy Spirit's voice in my head... "that's not a boy, that's my daughter" over and over again... Then I said to Karen, "This is the baby I was telling you about... but she is a girl and she doesn't need heart surgery!"  We decided that soon enough the doctors in China would realize that, we just needed to go ahead and raise the money.

By June, I learned the file was on its way to the U.S.  And it was prayerfully coming to the agency where Mr. Gu worked.  I called the agency daily and the day they received that month's files, the caseworker called me as she opened the envelope and went through the files... and at the very bottom... There it was.  I knew by this time that she was ours.  I could not and did not want to turn away and my husband was fully on board to make her our daughter.

We started the paperwork and by early October, I was on a plane to China with my best friend's sister, Anita.  My husband stayed home with our daughters and we were beyond excited to finally have her come home!  During this more than a year long odyssey, a close friendship developed between the Mom who had written the original post about raising money for foster care and myself.  She was thrilled with the direction this journey had taken and was going to meet us in China so she could be part of JiJian becoming part of a family again.

My first glimpse of her was in the hotel lobby.  The orphanage director and nanny had arrived early.  She was tinier than expected and was playing with the toy purse and its contents, that we had sent a month earlier.  Twenty minutes later, we were in my hotel room completing the paperwork.  About halfway through, I looked at her and she had taken off her shoes and socks and I almost passed out when I saw her dusky blue feet and clubbed toes.  I wanted to scream, "Wait, what happened here?  I thought she was healthy... God, I told you... This is not something I can do!"  But she had been left behind once... I knew what I needed to do and that was to bring her home... She needed a Mama, she needed the love of a family. We named her Sophia Sage... both names mean Wisdom. Her Chinese name is JiJian. It means to live a healthy and happy life. 

It was a rough trip emotionally.  It took less than the rest of the day to realize that as long as Sophia was at rest, she looked okay, not pink but she could pass for being healthy.  As soon as she took 3 steps, she was blue.  Everywhere.  Not only her little clubbed fingers and toes but her lips, her tongue, her ears.  After about 6 steps, she would squat to regain her breath.   My husband back home called the Pediatric Cardiologist, who had reviewed her file and convinced her to call me in China.  When I described what I was seeing, she said, "The films you showed me are not consistent with the symptoms you are seeing.  Those could not have been her films or medical records."  I asked, "Will she survive the flight home?"  To which she replied, "Pray hard." 

I spent a lot of that trip crying.  I remember being in the middle of a marketplace and bursting into sobs.  I didn't want to fall in love with her.  It would hurt too much when she died.  I convinced myself that it was inevitable since now I had no idea what her diagnosis was and if it was operable.  This was before I had ever seen a heart baby or child.  It was before Facebook and stories of children who came home and survived and even thrived.  In 2002, families were bringing home healthy baby girls or in the rare instance that a child had a special need it was minor like a small birthmark on her leg.

The day after we came home, the Pediatric Cardiologist opened her office early to see us.  She did an echocardiogram and told us that although Sophia's heart disease was complex, it looked operable.  When at rest, Sophia's oxygen stats were not that bad, her body had adapted by building up the iron in her blood to compensate for her heart defects... one which shunted her deoxygenated blood back into her body instead of the right side of her heart.  Her atrial septum looked like Swiss cheese.  She had a total of four major heart defects.

Within a week, we were at Children's Hospital of Philadelphia, better known as CHOP.  We lived only an hour away.  After some testing, the CHOP cardiologist, Sarah Tabbot, quickly said that our surgeon would be the infamous, Dr. Thomas Spray, who takes on the most difficult and challenging cases.  We quickly learned that this is the guy who writes the medical books on Pediatric Cardiac surgery.  He is a world renowned surgeon.  There is no doubt that God guides this man's hands in the operating room.  He performs feats that no other surgeon would attempt.  And he is humble.  Dr. Spray said he had never seen her specific defect before:  an extra Superior Vena Cava on the left, a severe Atrial Septic Defect and left Atrial Enlargement.  

Within a couple of weeks, Sophia was getting her surgery.  It was the week before Thanksgiving and we were given the option to wait until after the new year.  But seeing your child blue is scary... real scary and we wanted it done as quickly as possible.

The morning of the surgery, I was at the hospital alone as my husband was getting our other two girls to babysitters.  The OR nurse came in to tell me when they stopped her heart and she was going on bypass.  My husband and 2 friends arrived.  About 5 hours later, Dr. Tabbot came out to the waiting room and told us that she was pink!!  Dr. Spray, then came out and said that she gave him everything he needed to fix her heart, no artificial tissue, no blood transfusion, no pulmonary hypertension.  She was fixed.  Period.  No cardiac medications after one month.  She was discharged 3 days later with no restrictions. 

The day of the surgery, one of those two friends who was at the hospital told me that she called her mother to tell that she witnessed a miracle.  That a little girl from halfway around the world, who was in a seemingly hopeless situation came to become a daughter to a family who lived one hour from the only surgeon who could repair her complex heart.  God had performed a miracle in Sophia's life.

Sophia is now 16 1/2 years old.  She is a beautiful young woman with so many wonderful attributes but the one we are most proud of is her heart which is filled with joy, a love of life, faith, kindness and compassion. 

Her heart that was once broken is now beautiful because of what's in it.


Andrea Olson said...

Thank you for sharing!

LisaE. said...

What an amazing story and such a beautiful young lady! Thanks for sharing!

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