Guest post from Lindsay Naylor, MS, CF-SLP

Lindsay Naylor, a recent Mercy alum, has traveled to Ghana to work with children with autism, and has lived in Costa Rica, where she learned to speak Spanish so beautifully. Here she shares the story of one client we saw in Lima. It was a life-changing event for this family. Keep your eyes on Lindsay…she is destined for great adventures ahead.
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Both Dr. Berkowitz and Dr. Buhler had warned us that during our week at the hospital people would show up at any time for speech therapy bringing their friends, family, sister’s friend’s mother’s neighbor, you get the idea—however, some people we met on Monday actually came at the times we gave them. One of those families was a sweet little family made up of an adorable little 6 year old, a mom and a grandmother. This sweet little girl was dressed in a pink pea coat (even though the gringos were in our T shirts). Dr. Berkowitz and I had the pleasure of meeting and helping this great family. The mother and grandmother explained that their adorable little girl had Down syndrome, was bright and social but did not have many words. After going through an interview and providing tips for mom and grandma to use at home, we played with the little princess and sure enough she was bright as ever, she pointed to every picture we asked her to, she followed all our directions, and she made some requests of her own- pulling us or shoving toys in our hands. I gave our little friend some toys and bracelets and a very exciting microphone (one of those dollar store microphones that will echo what you say).

While the family was explaining that their little lady loved to ‘sing’ songs Dr. B. jumped up and began singing ‘head, shoulders, knees and toes’ Spanish edition. The little girl’s eyes lit up, she jumped right up and the three of us enjoyed 4 or 5 rounds of Dr. B.’s lovely song. During our dance party – we introduced the sign ‘more’ to provide the little girl with a mode of communicating her wants and needs. We explained to the family that using this and other signs or pictures would allow their little lady to communicate until more words came along. It didn’t take but one time before the little girl started using the sign! It was so great and then she was on a roll, poor Dr. B. couldn’t stop singing. Once the little girl learned the power of her ‘more’ sign she was requesting ‘more’ singing and ‘more’ playing. This amazing dance party allowed the family to see that this bright little lady could use different ways to communicate her wants and needs and to express herself. We were also able to teach the family to embrace their little lady’s love for singing. Make everything a song- we told them, sing in the morning when you’re getting ready, sing while you’re making dinner, sing while you’re putting on your shoes- you get the idea. The family loved the idea and while I was giving the family more tips and ideas to help our little friend the princess was busy tugging on Dr. B.’s arm and signing ‘more’ for more singing! It was a very successful session and the little girl was singing her heart out in her dollar store microphone and the family was happy and empowered to help their little love.

Moments like this make my heart so happy. I am so grateful for these adventures. How incredible that we were able to help this little lady, empower her family and give them easy functional tips and strategies that would help everyone. I love being an SLP! Thank you for everything Dr. B., especially your fabulous Spanish song singing skills. Muy bien!

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She came all this way…

As I mentioned earlier, some babies we saw had very complicated health concerns, beyond what we were prepared to handle as a cleft team. What could be more difficult than turning a mother away? And yet, we sometimes must do just that.

Typically on these trips, babies must weigh ten pounds and be ten weeks old to have surgery. So when a mom arrived with an eight week old baby, weighing seven pounds, it was already unlikely that the baby would have a repair of the bilateral cleft lip on this trip. When we discovered that the baby had some severe gastrointestinal concerns, I had a sinking feeling. This was not the kind of kid where the surgeons could operate and just skip town. This baby would not get surgery this trip.

However, the speech team did have something of value to offer this mom and child. 

Babies with cleft lip are usually good breast feeders, once the mom figures out a position that works. The tongue and the hard palate are way more important than the lips for stripping the milk from the breast. But this baby had a palatial cleft as well, so nursing was an extreme challenge. The mom had been expressing her milk into a bottle and trying to feed the baby with the only gear she had. It was almost working. Lindsay and Vanessa set her up on a system where she could express the milk directly into a bottle, screw on a cleft-appropriate nipple, and feed the baby much more efficiently. They worked with her for a long time and made sure she had the hang of it. Hopefully with this system in place, the baby will gain well and perhaps have surgery next time. 

We were glad to have something to offer, even though it was not what they came for.

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Meet the team: Richard Schneider, RN

Richard Schneider, RN, worked as a nurse in the burn unit for many years, and has recently retired. In the past six months, Richard has been on six medical missions, including Peru (twice), Nepal, Colombia, and Vietnam. Speech language pathologists are important personnel on cleft palate trips, but Richard’s nursing skills are valued on any kind of medical mission. He has participated in trips treating burns, orthopedic problems such as club feet, others I am not recalling, as well as cleft lip and palate.

Richard is the true embodiment of what it means to be a caregiver. Do you have a sniffle? Richard has chicken soup. Is it your birthday? Richard will present you with a goody bag. Did a piranha bite your finger on the Amazon River? Richard will clean and dress the wound to hold you over until you can get to a proper hospital, two hours upriver. He truly loves children all over the world. His retirement is turning into “have scrubs, will travel,” and he is loving every minute of it.

If you want to hear the story of the time he almost burned down the hospital, you’ll have to buy him a drink next time he rolls through your town, on his way to help more kids and have more adventures. A tip of the scrub cap to Nurse Richard, wherever he is bound.

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More Tuesday Feliz cumpleanos

Tuesday continued…

We headed back to clinic with our laryngologist, Craig Zalvan, MD, a natural teacher and mentor for our students. A woman who had lost her voice was waiting to see us. Craig walked the students through the differential diagnosis as we prepped the room and the laryngoscope. Lindsay began passing the scope and Craig finished up, showing us the woman’s vocal folds. When you would expect to see motion as she breathed and as she produced a vowel, her vocal folds stayed still. We explained to her that this bilateral paralysis was a result of her recent thyroid surgery and that her voice would likely recover in six months or so. She was relieved to hear that she did not have any malignancy or other lesions, and has hope that the nerves will heal. Scoping persons with voice problems and swallowing problems was a new addition to our trip, thanks to Craig. We are so happy to be collaborating with him.

Wow, am I still giving the Tuesday play by play?
Next up was a parent meeting, going over how to help the kids develop good speech skills with their new palates.
Then, feeding and swallowing therapy.
Back to the recovery Ward for post operative follow up. Vanessa’s expert Spanish and natural way with the parents was a great strength, as she instructed moms on how to use the special bottles and nipples from Medela, Habermann and Pigeon. Pigeon donated their nipples to the trip and our student group, Mercy College Chapter of the National Student Speech Language Hearing Association (NSSLHA) raised funds for the rest.

Helen says, the best birthday gift was seeing the mom’s and dad’s joy looking at their baby’s new face and the possibilities that opens up for their lives ahead. How wonderful to share this with my students.

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Meet the team: Ann Councill Brown

Ann is our administrator on this trip. She has been incredibly organized and unflappable, from the time we started planning the trip, on arrival and all throughout the week. It is far from an easy job to manage thirty volunteers from various locales, plan their flights, find a bus, a hotel, meals, coordinate with the hospital staff, work with Lourdes Queen of the Patient Finders to get the patients from 12 hours away and bring them via bus, stick some in hotels, make sure the charts are all in order, track the luggage, arrange for birthday cakes…are you tired yet?

One day this week, we were in the middle of sending patients home. One mom and her son, about eight years old, were in a corner of the ward and insisted on speaking with Ann. No, they did not want me to explain the discharge instructions, no they did not want me to answer any questions, they just wanted Ann. She found a moment to go over to the family, and the little boy presented her with a drawing, saying “gracias doctores.” All who were present were in tears. Suddenly, all of the preparation, details, snags and snafus were forgotten, and we were all right there in the moment, feeling the magnitude of what these trips really do.

Kudos to Ann, and I know we would trust her to lead us to the ends of the earth.

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Internet

The blog posts will continue…when I have reliable internet.

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Tuesday part one

Tuesday was Helen Buhler’s birthday and this blog post is based on her thoughts. She said:
What better way to spend my birthday…the singing has not stopped. First I was serenaded on the morning bus ride, and then in the operating room. When Peruvians find out it’s your birthday, they kiss you with great exuberance, whether or not they have ever met you before.

One of the many gifts I received this year was the opportunity to see the joy and enthusiasm of our students as they fall in love with medical mission work and the people of Peru. I predict that both Vanessa and Lindsay will participate in a trip like this again.

Tuesday started with screening fourteen more patients who arrived last night from an area where they speak Quechua as their first language, and some parents did not speak any Spanish at all, so it was an added challenge for us to find translators. Just one of many unexpected hurdles we dealt with, as we always do. Some of the prospective patients had very unusual medical conditions, far beyond what we can handle on a trip like this. (More about this later.)

After our speech screenings were complete, we put on scrubs and headed for the operating rooms. Manoj Abraham, MD, was performing a very complicated surgery on a young toddler who had a bilateral cleft lip with the premaxilla, that is, the gums and two front teeth, separated from the rest of the upper jaw. This was the first time the students had seen any surgery, and they were fascinated. Their understanding of anatomy for speech is surely deeper and more meaningful now. The magic of seeing this child awake with an intact face when we go on our rounds in the ward later is beyond description.

Next we peeked in on Ryan Brown, MD, our leader on this trip. He was repairing a unilateral cleft lip on an infant aged 3 months. What an amazing gift for this child and his family…a beautiful little mouth, perfectly pieced together by an expert surgeon.

To be continued…

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