Our Greatest Adventure

July 8, 2019 cl/cp, Craniofacial, Family Stories, July 2019 Feature - Craniofacial, orphanage realities, speech therapy, velopharyngeal Insufficiency 2 Comments

A little about us – we both got married for the first time in our 40s. I think of ourselves as late bloomers. Although we both had nieces and nephews, neither of us had a lot of experience with children. So, each of us entered the adoption process with trepidation and thoughtfulness.

Our process took 17 months from start to finish during the China orphanage partnership era. We both knew we would do better with an older preschool age child. As Dave said, “Gabby is the driver of the bus and I am the willing passenger.”

On Dec 4th, 2017 we met a scared and “shy” four-year-old. Her first prompted words to us were “Mama” and “Baba”. Whether or not she was prepared by the orphanage staff to understand her adoption – we will never know. All we knew was that we loved this little girl and were prepared to love her and give her a better life.

Olivia was born with unilateral cleft lip. Her lip was repaired around the age of two, but her palate was not. This made it very difficult for others to understand her. An observation by a volunteer who went to take pictures and videos stated, “Her palate is not repaired yet. She is active and talkative, but it is hard for me to understand her since her pronunciation is not clear. Her other development is very good.” Imagine the frustration a toddler feels when they are not able to communicate their needs verbally. Olivia learned to pantomime her words which still serves her well to this day.

In China, a child born with cleft is very much stigmatized as cursed child. So even though Olivia’s lip was repaired, she would have a very unlikely chance to live a “normal” life, much less get married. Thankfully in the United States there are resources and clinics specifically designed to treat cleft affected children. Our cleft clinic is only 15 minutes away.

On our family day we discovered that Olivia did not know Mandarin nor Cantonese, but rather a rural dialect local to her area. One of the directors who traveled with her wrote down two words “fang-yo” for pee and “fang-dai” for poop. Two words… that is all we had to communicate with a four-year-old.

After our meeting we went back to the hotel filled out more paperwork and our guide left us with our daughter. Now what?! Let’s go eat! Off we went to the executive lounge for our first meal as a family. It was a quiet place with lots of food options. From my research it was very possible that our child could have food coming out of her nose when eating due to unrepaired palate. That was not the case as we watched her intently. Olivia also ate everything we put in front of her. Granted we cut things up in bite size pieces and we also learned she could not sip using a straw (not enough air pressure).

After dinner we headed back to our suite to get Olivia ready for bed. This meant her first shower given to her by a stranger. I put on my swimsuit and hopped into the large shower with her. That was our first bonding moment. Imagine the mixed emotions this child had – fear, trust, shock, bewilderment. I had no idea what to expect, but Olivia did not fight nor fuss in any way. She seemed to enjoy the warm of the shower and the feeling of being clean – which is true to this day. I wrapped her up in the big fluffy towel and even used the blow dryer to dry her short hair. In the meantime,

Dave blew up the airbed in the living room area of our suite. After lotion and fresh pajamas – we took Olivia over to her bed and we had our first breakthrough! Olivia saw herself in the mirror and let out a deep belly laugh. This moment is etched into mind heart and mind and I knew we would be okay. After a full day of travel, different sights, sounds, smells, foods, meeting and staying with two strangers – this child found joy in her experience.

This moment of joy has set the tone for many days to come.

At this point, we have been together 18 months. During that time, we have had three surgeries. The surgeries included palate repair, tonsillectomy and a p-flap. The palate surgery took place at three months home. At that point Olivia was five and she understood that her mouth was different that ours as she had “a hole in her mouth”.

So how do you prepare a child with limited English for an upcoming surgery? You make it fun. Luckily, Baba is a Nurse Anesthetist – he basically conducted several child life sessions to prepare for each surgery by showing her a video several times. At the end of each session he finishes it off with a fun happy music video. For each surgery we approach it the same way – Chinese takeout, a child life session and a happy dance video. Let’s just say Olivia loves Kool and Gang’s Celebration.

March 6th, 2018 – On the day of her palate surgery – Olivia knew and understood what to expect. The hospital staff was so impressed with her confident and fearless demeanor. We are fortunate that Olivia has no medical trauma issues. I do find that surgeries and hospital stays have helped Olivia trust, bond and attach to us. We explain to her that the three of us will be together throughout her hospital stay and that the three of us will leave together. The challenge with any surgery is always the recovery; pain management is vital. But the liquid diet always adds a bit of a twist to recovery as you want your child to continue to feel secure about food.

Many children who spent any time in an institutionalized setting have experienced hunger, so ensuring they feel satiated on a liquid diet can be a challenge. But we have found there are a few favorites and it helps that Olivia likes soups.

March 19th, 2019 – One year after palate surgery, Olivia’s tonsils were removed in preparation for a pharyngeal flap surgery. The tonsil recovery was the hardest recovery of all three surgeries. Mainly because once the pain eased off – the pain came back in full force on the fifth day. When they say one needs two weeks to recover from tonsil surgery – it is true. Olivia had a couple of days where she was content to watch a movie or two which is unusual for an active six-year-old.

May 21st, 2019 – Although her palate surgery was successful, Olivia experienced hypernasality which was caused by her soft palate not closing off at the back of the throat which leads to air coming out from her nose. This would cause certain sounds such as “p” and “s” to be intelligible.

This velopharyngeal insufficiency (VPI) was confirmed by a nasal scope which is basically a thin flexible tube with a camera and light at the tip. About 20% of children who have their palate repaired will experience VPI. Olivia had a late palate repair at age five which does not work in her favor. The pharyngeal flap is essentially a bridge in the back of her throat. Muscle is taken from the back of the throat and attached to the soft palate while leaving two ports (holes) on either side. The p-flap surgery recovery was like the palate repair with the liquid diet as the most challenging piece.

At the time of this writing, we are six weeks post-op of p-flap and taking a wait and see approach. Our surgeon basically said, “She now has the hardware and we need to wait and see if the software catches up.” The software is referring to her speech therapy. Since we are dealing with muscles everything is related to muscle memory.

So, what is day to day life with a child affected by cleft? Very normal and manageable. Olivia eats everything, goes to a public school, plays hard, sleeps well and makes friends. Olivia attends private speech therapy at our local Children’s Hospital and receives another hour of therapy per week at her public school. We practice her assigned sounds at home each day. We read books, we play games, ride bikes, go swimming etc. Our medical appointments tend to be spaced out and we go to the Cleft Clinic about once a year.

Many people will ask me, “How many more surgeries will she need?” At this point we know she will need two more. The first one being a bone graft where they take bone from her hip to address the cleft in her gumline. Bone is needed for the adult teeth to have an anchor. This process will begin with a palate expander about three months prior to the bone graft. We will begin this process more likely in the fall of 2019.

The other surgery she will need will be one to address a collapsed nostril due to the cleft. This will more than likely be addressed in her teen years. Most recently Olivia has asked, “Why is my nose flat on this side?” I simply respond, “That is how God made you. Everyone is special and unique in their own way.” Olivia’s uneven nose and lip scare are very subtle, but we give her the tools to address any questions or comments by others.

So again, Olivia’s medical need is very manageable. I find that the post orphanage emotional needs can be a bit more daunting. Every child that was institutionalized will have some sort of social, emotional, cognitive global delay. The statistic that for every month a child has been institutionalized they will be delayed about three months is very true.

Olivia had never held a crayon when we met her at age four. Now she can color and write words. She never played with toys, dolls or blocks. Now she can pretend play on her own. Olivia did not know the Mandarin alphabet and now she is reading in English. This are just small examples where progression and growth have taken place. The last 18 months have truly been a worldwide of building love, trust, knowledge and learning for all of us. But just like any child, we will have some amazing days and some challenging ones as well.

I find that the cleft journey is a marathon rather than a sprint. After each surgery there is a wait and see approach. It takes time to heal. It takes time to relearn sounds. Much time is also spent on learning about cleft. Such as the stages of treatment, insurance challenges, and other’s experiences. In addition to cleft education there is always reading about child behaviors and parenting. One could easily get overwhelmed with the grand scope of things, especially in the beginning. But – just like our adoption journey – we must take it one step at a time. Most importantly, know that you are not alone.

In our area there is a great Cleft support group (Face to Face) that holds conferences, picnics and get togethers so that the Cleft community can support and network with one another. There is even a Cleft camp for the kids. Then in the online Facebook world, there are several groups that are not only specific to cleft but specific to children from China adopted with cleft. So really there is never a reason to feel alone. I’ve been amazed by the resources available.

On Dec 4th, 2017 we met a scared and “shy” four-year-old. Today Olivia has been described as smart, funny, brave, confident, pretty, adventurous, loving and caring. Olivia is anything but shy. This little girl takes life by the horns and makes the best of every moment. She experiences joy each and every day.

We are the lucky ones to be Olivia’s “Mama” and “Baba.” As my 90-year-old grandmother has said, “Olivia is truly a blessing from God.”

guest post by Gabby (abbygabriela@hotmail.com)

2 responses to “Our Greatest Adventure”

  1. Jeanette says:

    This is so inspiring and heartwarming to read. There is such a sense of peacefulness throughout your emotional and challenging journey. Thank you for sharing!

  2. Mary Ann Buccino says:

    Gabby and Dave,

    How blessed Olivia is to have wonderful, caring, giving, loving Mama and Baba. She is darling little girl. I envy you for making a Christ-like step and saving her life. God bless and keep you all in His arms forever. 🥰💖

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