We’ve Got Your Back: Lilit In America!

Source: http://lilitinamerica.blogspot.com

 

The Green Light – January 22, 2016

 

After reviewing all information, Dr. Caridi and his team decided that Lilit is, indeed, a candidate for spinal surgery that will significantly enhance her quality of life as well as prevent additional health problems in adolescence.

Lilit’s ten-hour surgery will be complicated, removing several ribs and vertebrae and inserting a metal rod to reduce the 120 degree curvature of her spine.  If all goes as planned, Lilit will not need additional surgeries or follow-up care in the future.  Rehabilitation could take as long as two months, however.

Lilit’s surgery is scheduled for January 27.

Learn more about Lilit’s journey.

News from Armenia: Kybele's 5th Teaching Visits Continue to Advance Women's Healthcare

The following brief summary of the Armenia program's progress was submitted by Co-Team Leader Dr. Gordon Yuill.

Kybele Team members have made five trips to Armenia so far.  Initial visits were paid to Yerevan (in 2006, 2010 and 2012), but more recent trips included stops in Gyumri (2012, 2013 and 2014), Akhuryan (2012, 2013, and 2014), Dilijan (2012), Ijevan (2012), Novemberian (2012), Karabakh (2013), Artik (2014), Matuni (2014), Gavar (2014), Sevan (2014), and Hrazdan (2014).  Each trip has consisted of a one-or-two-day national conference in Yerevan followed by small-team visits to individual maternity clinics, where Kybele volunteers worked alongside the local physicians.  Through this process we have seen an increase in the use of regional anesthesia for cesarean section throughout and an increased availability of epidural analgesia for labor in some units.    

News from Serbia: The Kybele Serbian team returned to Novi Sad, Serbia for its third visit!

 
Some of the Kybele team members and host staff in the labor and delivery area of the Klinika za Ginekologiju i Akuserstvo.

Serbian Team Returns for Third Visit to  The Clinical Center of Vojvodina in Novi Sad, Serbia

Article submitted by Dr. Curtis Baysinger and Dr. Ivan Velickovic

The Kybele Serbian team returned to Novi Sad, Serbia for its third visit in as many years. Hosted by the Clinical Center of Vojvodina, team members Ivan Velickovic, MD; Ferne Braveman, MD; Curtis Baysinger, MD; Sarah Foggi, MD; Medge Owen, MD; and Lawrence Fordjour, MD, built upon work that had occurred during the previous two years with host Dr. Borislava Pujic and other staff members. As in past years, a weekend conference (which attracted participants from Serbia and other Balkan countries) was followed by clinical instruction by Kybele team members. For the second year, lecturers from the Mayo Clinic in Rochester, Minn. participated during the weekend lecture course only.

 
Dr. Velickovic demonstrating epidural placement techniques.

In contrast to past years where the five days of the visit focused primarily on clinical practice by the staff at the Novi Sad Center, practitioners from the surrounding community also participated, with host staff acting as instructors.  Thirty-seven regional blocks for labor analgesia were performed, using equipment donated by BBraun Serbia.

Resident physicians who were rotating in obstetric anesthesia at the Novi Sad site were given hands-on training, as well as instruction provided both by Kybele members and host staff. The training model of host staff acting as instructors for resident hands-on training is not the current model for residency education at the Clinical Center.  The training may significantly change the current training practices going forward.

Protocols for regional labor analgesia, regional anesthesia for cesarean section, and regional opioid analgesia were developed with the host staff and were put into practice. Two mobile carts for storing supplies for regional anesthesia were donated by Kybele and both were stocked with supplies by the host.

Suggestions for evidence-based practice were made to staff obstetricians and neonatologists to help improve resource utilization and patient care. Return visits are planned for June 2015 and September 2015.  

During the visit, Pujic and Velickovic were interviewed on Novi Sad's morning talk show "Good Morning Novi Sad" and discussed the partnership between the Novi Sad Center and Kybele as well as the progress toward increased use of regional analgesia.  

See MORE PHOTOS of this recent Serbia program.

Grants for Medical Reviews!!!!

Source: http://www.sparrow-fund.org/

"The adoption process can be a wild ride. It can be a time of great emotional swings—fear, excitement, grief, joy—that can make it difficult to always know the right next step for your family. Many of us have found support from the adoption community, a tight-knit group, historically ready to support other families in the adoption process. Though this support is very helpful, support from professionals who can come along side of us and prepare us in ways that we would not be able to ourselves is crucial.

We believe that the family is responsible to be as well prepared as possible for the major life change that adoption brings. One of the most significant ways you can prepare yourselves is to bring in medical professionals to work with you to understand what it means to bring a child out of an institution or foster home and transition him or her into a permanent home. Furthermore, when you review an available child’s paperwork or receive a referral, this child you have dreamed about is no longer a dream but is an actual child…perhaps your child. These professionals provide valuable insight during this process regarding what needs the child has and how to best care for him or her and help to prepare you to be the parents to that specific child. We want to encourage adoptive families to seek out a medical organization offering comprehensive support, a program that includes more than a quick review of some paperwork and a summary email or phone call, but rather an organization that (a) works with you pre-referral, (b) helps you work through any and all medical info provided when you first receive or are considering a referral, and (c) offers post-placement support.

Using a service like this is costly on top of an already expensive adoption process, especially since medical insurance will not cover these costs because the child is not an official dependant. However, it is an invaluable service that can bring real clarity when it is most needed. It is also where we come in. We find this service so important that we want to provide a way for families to enroll in these programs who otherwise would not be able to handle the expense. If you believe you would qualify, we encourage you to apply for a grant. If you do not think you would qualify but understand the benefit of these programs, we encourage you to partner with us and donate so others have the opportunity to take advantage of this service.

Basic Application Process:

• Find a medical organization that offers this type of service
• Determine if you need help paying for this service
• Fill out The Sparrow Fund application. Click here to download the form.
• Gather additional documents:
• Copy of your initial home study and any subsequent updates
• Copy of your most recent pay stub(s)
• Letter from your adoption agency. Click here for a sample.
• Copy of the application to the medical review service provider (if applicable)

Mail all the documents to:
The Sparrow Fund
Attn: Application Review
124 3rd Ave
Phoenixville, PA 19460

We will only accept applications from January through October. Any application received in November or December will not be reviewed until January.

The Sparrow Fund will review the application and determine if you qualify for the grant
and contact you as soon as possible."

http://www.sparrow-fund.org/serve.html

Bow Ties and BBQ: Only 5 DAYS Left to Register!

DID YOU KNOW....

• Kybele has recruited more than 220 volunteers to participate in medical training programs in 11 countries.  These professionals have come from over 70 different institutions worldwide with the vast majority traveling multiple times to volunteer their time and medical expertise.

• Nearly 50% of these volunteers have come from North Carolina hospitals.

• The work Kybele has done for the past 5 years in Accra, Ghana has significantly reduced both infant and maternal mortality in a leading regional hospital.

• Kybele's work has been published dozens of times in national/international medical journals, books, and publications.

• Our programs are making a TRUE DIFFERENCE in the lives of women and children in our program countries.  National medical protocols are being changed.  Lives are being saved.  Women are experiencing a more compassionate, safe, and successful childbirth experience.

Here is what you can do to support this effort....

If you are in the Winston-Salem/Greensboro/Raleigh/Durham area: 

Register for this event by August 10th.  We guarantee a great time. 

$60 for Adults  |  $35 for Medical Residents/Students  |  $20 for Children 12 & under

Click to learn more or to register.

If you are not in the local area - PLEASE consider making a donation on behalf of this event or become a member or monthly donor. 

Would A 'Cure' Change The Love?

By Beverly Beckham |  Globe Correspondent     August 04, 2013

Lucy loves to share online songs and videos with her grandmother.

It was the middle of the heat wave and we were inside sitting on the floor, Lucy using my iPad, looking at Disney characters on YouTube. “Not that. Not that. Not that. This one, Mimi!”

Then she clicked and Mulan sang.

“Who is that girl I see

Staring straight back at me?

When will my reflection show

Who I am inside?”

Then she clicked on “Pocahontas.”

“You think the only people who are people

Are the people who look and think like you.

But if you walk the footsteps of a stranger

You’ll learn things you never knew you never knew.”

Then she chose a clip from the Disney movie “Tarzan.” A mother ape walks out of the woods holding a human baby and the other apes gasp and the dialogue went like this:

“Freaky looking.”

“What the heck is it anyway?”

“He’s a baby,” the mother explained.

And the other apes looked again and said, “You know he’s not so bad, once you get used to him.”

And I looked at Lucy and thought, as I have since the day my granddaughter was born, there is so much going on inside this child.

She turned 10 in June. Double digits. “You’re a big girl now,” we told her. And she is.

But she is not like most girls her age.

Lucy has Down syndrome and that makes her different. She was born with an extra chromosome that’s in each cell of her body. We human beings have 100 trillions cells. With that one extra chromosome present in all those cells, there’s a lot more substance to Lucy than to most people.

But substance is not what people see.

Lucy was born with a heart problem that required surgery. People saw this. She walked and talked later than typical kids. They saw this, too. She has trouble forming sentences. She has to work hard to speak clearly. She has low muscle tone. And she is intellectually delayed.

These are the things that most people see.

Her essence?

Lucy wanting me to hear words that have meaning to her. Lucy, knowing when someone needs a hug. Lucy, walking up to an elderly woman in a wheelchair, leaning close and asking, “Are you OK, Grandma?”

People don’t see these things.

When Mason, my goddaughter’s son, was born in the spring, Lucy, her mom, and I raced to the hospital to meet him. Lucy took off her shoes and climbed onto the bed and plunked herself between Sarah and her husband, Kyle. And draping one arm over Sarah’s shoulder and the other over Kyle’s she declared with a huge smile, “My family.”

Lucy knows things.

Her extra chromosome gets a rap for all of her disabilities. But could it be responsible for this, too, for her ability to love and empathize, for her insight, her honesty, and her genuine goodness?

Last month, Jeanne Lawrence, a researcher at University of Massachusetts Medical School, wrote in the science journal Nature that she and her team had figured out a way to switch off the extra chromosome linked to Down syndrome in human cells in a laboratory.

This is a huge discovery, a potential cure for Down syndrome.

But what does cure mean? What more, besides medical and intellectual issues, is that one extra chromosome responsible for?

Lucy tries so hard. When she was a baby, we would watch her practicing her words, holding her toy mirror and studying the shape of her mouth. She still practices words and phrases. “How are you?” “May I please have?” Is this Down syndrome? Or did she get this doggedness from my father? He couldn’t spell. But he never stopped trying.

Lucy likes musicals and show tunes. Is this Down syndrome? Or does she like them because her mother and Aunt Julie and I do?

The other day she sang a duet with me. She was brushing her teeth and I was beside her and she put down her toothbrush, brought her head close to mine, and grinning in the mirror, began.

“Together at last. Together forever.

We’re tying a knot, they never can sever!

I don’t need sunshine now, to turn my skies to blue.

I don’t need anything but you!”

Is this Down syndrome? Maybe. Maybe not. But if it is, why would we ever want to change it?

Beverly Beckham can be reached at beverlybeckham@me.com.