LWB Community Blog

Surgery Mission – Day One

Welcome from Sunny Shanghai

Beautiful babies and children everywhere! Not only was the sun shining, but the smiles of the children literally glowed inside. Today, a small group arrived at SCMC to get set up for the surgeries that will start tomorrow. Charts were created, pre surgery photos were taken, exams were done, and introductions were made.

We were so fortunate to have Dr. Bonnie Straka, a dermatologist with us today. Even though she is on an adoption trip, she is able to spend a few days with us in Shanghai. She saw some very adorable children with skin issues ranging from eczema, ichthyosis, to three very rare conditions – XP (Xeroderma Pigmentosum) a very rare pigment disease (1 in 1,000,000), a very rare form of Sturge Weber Syndrome, and a nevus/tumor condition. Each of these children touched us. Dr. Straka spent so much time with the caregivers of each of these children, explaining how to best care for the child and providing treatment options.

The little boy with XP, Yong, was so very solemn and so adorable in his hat. His caregiver was so good with him, holding and talking softly to him. He stood so very still for his exam, so rare for a two year old. I was so touched when I put out my arms to hold him and he came to me to be cuddled.

Feng Feng, the eight year old child with what Dr. Straka believes is a very rare form of Sturge Weber syndrome was enthralled with a magna doodle. His form of the disease is affecting his eyes, causing some nystagmus. This didn’t stop him from carefully copying the circles and creating other doodles. After just one time, he learned how to erase the board and put the pen in its spot. He was also very ticklish and had the most beautiful smile. It was easy to see how he has touched so many. We learned that at the orphanage, he is so good helping the caregivers with the younger children. On Monday, we are arranging for him to have an EEG and an ophthalmology exam.

Yuan Yuan, the little six year old girl with the facial tumor and nevus, was just so sweet. She loved entertaining everyone. When Wendy, the Assistant Trips Coordinator, went into her room today, she started yelling excitedly, trying to call her over. Wendy went over to see her and Yuan Yuan wanted to share her cookie. Wendy tried to tell her that she didn’t care for any, but Yuan Yuan wouldn’t take no for an answer. Being a great sport, Wendy took a bite and Yuan Yuan just beamed. Later, Wendy went and gave her some beads to wear and she chose three strands. She enjoyed taking them on and off. When Wendy tried to give her a cute little bunny beanie baby, she took it, looked at it, tapped it on the feet, gave it back, and then said something to Tingting. Everybody around laughed because she had said that she didn’t want it because it didn’t have shoes. When all of the doctors went into examine her, she went up to every single person saying “Ni Hao” and shaking their hand. Personality is her middle name. She will be having surgery on Monday to remove her upper tumor. Her surgery is planned and will take quite some coordination. Dr. Buckmiller, Dr. Straka, and Dr. Bao will be working together, each with an important part. This surgery will take between 3-4 hours and will hopefully give her a new forehead.

In the afternoon, Dr. Wu, the Vice Director of the hospital, gave us a behind the scenes tour of the hospital, including a stop in the NICU (Neonatal Intensive Care Unit), PICU (Pediatric Intensive Care Unit) and CICU (Cardiac Intensive Care Unit). Even more fun was that we had babies in both the NICU and PICU. The premature twins that are 8 days old and arrive 2 days ago were so amazingly small. Both babies were about 2 pounds each and were doing so well for their size. They have a lot of growing to do before they can leave this unit, but they are just so adorable. I am just so glad that we are able to help these baby sisters whose name when put together means “Rainbow”. We have absolutely no funding for these sweet little girls, but we are moving forward in saving them on faith.

In the PICU, we have another newborn baby girl who is recovering from emergency anal atresia who looks great. The doctors have told us that she has gained so much weight and is doing well. I was so impressed by their units and the number of babies that they are able to care for. How fun it was to be in this very special area.

We had so much fun with the babies. They all had the cutest personalities and many have already been given nicknames – there is the noodle girl, the Buddha baby, the pink girl, and Giggles (boy can this baby belly laugh and laugh and laugh – it is VERY infectious).

The surgical team from Arkansas Children’s Hospital arrived later in the day. No sooner had they gone through customs and checked into their hotel rooms, than they were whisked off to the hospital to see the children. They examined each child that will have surgery on days one and two. So far, every child is healthy and will have their surgery. They discussed a few of the more difficult cases and made plans for how the week will be organized.

After the exams, we were whisked off to a very trendy Moroccan restaurant for a dinner hosted by the Shanghai LWB group. The enthusiasm and the amount of people willing to bend over backwards to help has been absolutely amazing. Everyone who traveled from the US was met and delivered to the hotel by a friendly driver, nametags and gift bags with treats were left, a snack room is fully stocked at the hospital, and friendly and willing volunteers arrive all the time waiting to do anything that is needed. Did I tell you that there are about 60 of these wonderful volunteers? – Amazing!

Tomorrow we will have a busy day with one bilateral repair, three unilateral repairs – two with ear tubes too, a child who will have a hemangioma removed from her nose, and exams of four children who have hemangiomas. I can’t wait to share our surgery successes and the new look each of these children will share. Stay tuned!

Karen Maunu,

Medical Director
Love Without Boundaries


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