Hirschsprung's Disease and International Adoption: Ashley JianjJie's Story

When Charlie and Lisa Lockhead decided to adopt a baby girl with Hirschsprung's disease from China, they sought advice from CHOP's International Adoption Health Program.

lockhead family We recently returned home from our adoption journey to China to bring home our 20-month-old daughter, Ashley JianjJie.

Our family of four — me and Lisa; and our boys, Kyle, born near Nanchang in Jiangxi province, and Dylan, born in Dalian in Liaooaning province — didn’t feel complete without a daughter. Plus, Mom was feeling badly outnumbered! So back we went.

Reflecting on all that happened leading up to our departure, during our time in China, and after our return, I thought we could offer some insight to families who are planning their own adoption journeys, and help them prepare for what’s ahead.

Take advantage of every resource

Ashley is a special needs baby. She was diagnosed with Hirschsprung’s disease, also known as congenital megacolon. As many of you may know, the medical records associated with Chinese referrals are sketchy at best.

To understand the magnitude of what we were about to take on, we leaned heavily on Abigail F. Farber, MD, then-medical director of the International Adoption Health Program at The Children's Hospital of Philadelphia.

We spoke several times on evening conference calls in the weeks before our trip. We asked the hard questions, and Dr. Farber shared her honest opinions. Later, we realized how absolutely essential these conversations were to us.

If you are traveling down the special needs path, you need to do everything you can to learn as much as you can about your child’s circumstances. You’ll need to be objective, realistic and introspective about what you feel comfortable taking on. You need to be sure you think about the best case and worst case scenarios.

Be honest with yourself and your family about how life could change. Ask for help — medical or otherwise. It’s a phone call away! And don’t believe everything you read on the Web.

Be as prepared as you can be

We decided to take both of our sons and my sister Rita, who is a registered nurse, with us on our trip. Because we were going in with eyes wide open, we understood that there would be serious risks, especially during the trip.

We felt that my sister’s skills and temperament would provide good “third-leg” balance, given Lisa’s and my personalities. And it was helpful that Rita had already developed a strong relationship with Kyle and Dylan.

If you have the chance, bring help with you. We could not have done this without Rita. We would have been outnumbered on the way home!

If you think you’ll need it, pack it (Lisa did!). Important items included American medicines that are not readily available overseas and non-perishable comfort food that can easily be thrown into a backpack or a purse.

If you can, bring a phone with global data capabilities. Our iPhone worked great, and many providers offer monthly global data plans. Also bring a laptop computer or netbook if you have one. Do not assume that you will always have access to either a phone or a computer in other parts of the world.

Know the baggage weight limits for all legs of your itinerary. It’s a little like space travel — every ounce matters. And when faced with the weight tradeoff of that extra pair of jeans for you or something that your child might need — you lose every time.

Carry native currency on you at all times, in case you cannot get to a bank. And be prepared to pay all hospital charges — usually with a large up-front deposit — prior to any care being given.

Write about it: it helps in many ways

Every family chooses to record their trip in a different way. For all of our trips, we used Google Blogger. But, you’ll need to install and subscribe to a VPN (Virtual Private Network) or other way to circumvent the “Great Firewall of China.” Internet traffic, especially Google (Blogger) is severely limited into and out of China. You simply won’t be able to see certain websites.

The VPN, which is a figurative tunnel under “the Wall,” helps to overcome these restrictions. Oddly enough, you’ll be able to learn more if you simply do a Google search for the term “VPN” and check out your options. An alternative might be to set up your account to accept emails as blog posts, which can work well in a pinch, but you will likely lose the ability to post photos.

Whatever blogging or journal tool you choose, be sure to capture as much as you can, by written or typed word, photo or video. Time goes by very quickly and it’s hard to remember everything. You’ll have a lot of people at home following along and hoping for the best for you, so make it worth their while to read what you write.

If you decide to blog during your trip, here are a few tips.

  • Don’t sweat grammar. Luckily, Lisa was available to edit my posts to correct some of my more horrific errors! 
  • Write like you’re painting a picture; use lots of color. 
  • Record the smallest details. These sometime help you to remember the entire story.

I always found that when sitting down to post, I was at my most reflective — it helped me to keep an even keel during the most challenging times. And remember, everyone who is reading at home, will want to feel like they’re right there in the taxi with you — don’t let them down. This will become the definitive family record of your trip of a lifetime.

Don’t panic

There will no doubt be a point where you are faced with a situation that you didn’t think you were prepared for. For us, that came when we arrived in Hong Kong for what we thought would be a few relaxing days of family time. It was late, around 10 p.m., and we’d just checked in to our hotel.

Ashley’s tummy had gotten a little larger than we’d seen before, so we arranged a Skype video call with Dr. Farber. Thanks to Dr. Farber’s ability to see Ashley, she could make an informed clinical observation. There is no way we could have described what Dr. Farber was able to see for herself. This video chat was truly worth a thousand words.

It took about 45 seconds for Dr. Farber to observe Ashley and to tell us that we needed to get her to a hospital with a pediatric gastrointestinal unit immediately.

“Excuse me, perhaps we have a bad connection. Did you say hospital?” We had no guide and no driver. But in 10 minutes we had a bag packed with overnight gear, we formulated a plan to have Rita look after the boys for the night, and we were in a taxi racing toward Queen Mary Hospital.

(A few taxi tips: Don’t get into a taxi without translated directions; it can make for a very stressful situation as many of the drivers say that they know where they are going, but actually do not. Also, take pictures of the signs and/or addresses outside of any buildings with your camera phone. This can come in handy and it saves a great deal of time when you can just flip your phone screen to the driver so he can see the signs in his native language.)

The key for us was to take a deep breath (or several), figure out what needed to be done, and make a plan to get us through the next 12 hours. We had the front desk at the hotel translate the address of the Hospital onto a card (which we still have to this day); we got ourselves to the hospital emergency room; made Ashley’s serious condition clear to everyone who could understand even a little English; got her admitted; and spent the next few days shuffling ourselves, Rita and the boys back and forth between the hotel and the hospital.

Even in the most difficult times, find little things to laugh about. You’ll need the mental break. For instance, how comfortable the drafty window sill next to Ashley’s crib was to sleep on; or that the price list posted in the taxi showed that each bird or animal would cost another HK$5; or how the X-ray technician at Queen Mary would set up his X-ray equipment in the middle of the hospital wing and shout “X-ray!” loudly as he snapped the shots of his patient — just a friendly warning in case you weren’t up for a dose of errant radiation!

Overall, keep things in perspective and try not to panic. You can do this, and chances are that you are your family will get home in one piece.

The entire experience is all still a bit of a blur. Sometimes I have to read our own blog posts to recall everything that happened before, during and after our trip. But when we sit down to dinner at the kitchen table on Sunday afternoon and I look across the table at Ashley, with “Yo-Baby” yogurt smeared all over her face, giggling like any other ordinary 2-year-old, and smiling ear to ear, it all seems to melt away.

By Charlie Lockhead, August 2012