Tuesday, February 3, 2015

Day 3 - Susannah Cope


My eyes were opened to the possibility of special needs adoption in January 2009, when my father underwent open heart surgery. I was already a prospective adoptive parent, clinging to every update from Rumor Queen as I waited for my baby’s referral. When my dossier was logged in on April 27, 2007, it included the familiar request for “healthy girl, up to 24 months of age.” Six months later, I gingerly added a Medical Conditions Checklist, signaling my openness to a handful of minor medical conditions.

But it was the sight of my indestructible father in a hospital recovery room that convinced me that I could raise a child with a major heart condition. At 76, he was a retired military officer and a lifelong runner. He went in for surgery to repair a leaky mitral valve, plus a Maze procedure to correct a troublesome arrhythmia. Once his chest was opened, the surgeon confirmed that he also had a VSD, and repaired it.  As he recovered in the cardiac ICU from three separate procedures, it was clear that he had never been knocked down so hard – yet he was still himself, cracking jokes and worrying about his family. The care my father received was superb, the doctors were reassuring, and soon my father was up and about. How ironic that my first visit to a cardiac ICU greatly eased my anxiety about raising a medically frail child!

In March 2009, I expanded my Medical Conditions Checklist to include major heart defects and said I would accept a child up to age 5. Less than four weeks later, I was matched with Dang Hong Cheng, a 4 year old girl with Tetralogy of Fallot.

Hong Cheng had been abandoned at a hospital as an infant. I can only believe that that her birth parents saw her tiny blue fingers, witnessed her tet spells, and concluded that leaving her in the hospital would give her the best chance at receiving the care she desperately needed.

She was taken to the Luoyang SWI, where was diagnosed with Tetralogy of Fallot. She failed to thrive in the infant room, and was transferred after a few months to a unit for dying children. It was there that she met her personal angel – an English nurse named Lyn Gould who was volunteering at New Hope Foundation under Dr. Joyce Hill. Hong Cheng was held and loved and began to respond to care. Meanwhile, Dr. Hill and Nurse Gould got busy securing the medical care Hong Cheng needed. In January 2007, her heart was repaired in the university hospital in Hangzhou. Within a few months, she was transformed – her cheeks were pink, she had gained weight, and she could smile.

Before and after surgery.

From July 2007 to July 2009, Hong Cheng was in foster care, and lived the life of a doted-upon little daughter of a couple with two grown sons. She blossomed in their care, though she remained under-nourished. She was plagued by intestinal parasites, undoubtedly the result of unhygienic water supplies. But she was happy, she knew love, and she was regularly monitored for her heart condition.

 Zuzu is what we now call this little girl with the big name of Susannah Genevieve Hongcheng Cope. She was tiny and timid when I first held her in Zhengzhou on August 24, 2009. At four years old, she was 31 inches tall and weighed 26 pounds – about the size of an American two-year-old. She was sleeping 14 to 16 hours a day, and that worried me. Was it because of her heart, or something else?

When arrived home in early September 2009, Zuzu was promptly seen by a battery of doctors and specialists, including an adoption doctor, who closely monitored her for the first year. But our first stop was with a pediatric cardiologist. He did a thorough workup and was pleased with the Tetralogy of Fallot repair that was performed in China. While the doctors in China used older techniques than our U.S. doctor was accustomed to seeing, he found the repair to be effective. He did determine that Zuzu had some pulmonary valve leakage, and said she should be seen every six months to monitor its progress.  Eventually she would need a valve repair or replacement, but it was too soon to say when.

In her first few months home, Zuzu started preschool and began making friends. She formed deep attachments to her family, especially sister Cassie and Mom.  She marked milestone after milestone – birthday parties, best friends, loose teeth, a visit to Disneyworld. And she grew! In her first year at home, she added about 8 inches and 10 pounds to her tiny frame.

Fast forward five years: Zuzu is now a 9-year-old third grader. She just had a huge growth spurt and is now wearing size 8 clothes. She sees the pediatric cardiologist every nine months. Her valve leakage has increased slightly, but its impact on her heart is still within acceptable ranges. She will be re-assessed very thoroughly in September, and at that time we will have a better idea of whether valve repair or replacement surgery can be staved off for a few more years.

Zuzu is a sunny, happy child for whom every day is “the best day ever.” She has an adoring big sister and many friends. Zuzu plays the piano beautifully, and loves to ride her bike, run, jump, play, do cartwheels, and hang upside down on the monkey bars. She is learning to cook. And boy, does she have spunk. When the hairdresser didn’t give her the pixie cut she wanted, she decided to trim it herself. And she didn’t do a bad job! (Though we did get it touched up.)

On balance, her health is very good for a child with a congenital heart defect. Her only limitations are that she can’t climb mountains or go deep sea diving, and she has to take antibiotics when she visits the dentist.

And thankfully, there is no evidence of any developmental delays related to low oxygen levels in infancy; in fact, she is very bright and has a real “Lego brain” – she likes puzzles, math, and science. She receives weekly in speech therapy to deal a few small issues related to her late acquisition of English.   

Most of all, she has a beautiful spirit. She is a kind, generous, cheerful, and observant child. Zuzu’s goal in life is to become a counselor because she wants to help people solve their problems.

Every day, I am grateful that the scales fell from my eyes and opened my heart to adopting a child with a major congenital heart defect.


Andrea O. said...

I enjoyed reading about your beautiful girl! Thanks for sharing!

LisaE. said...

What a gift for your father to have a trial he went through bring you to a such a wonderful blessing. Thanks for sharing your story!

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