Micah Smiles benefit concert at The Ark to raise money for C.S. Mott Children’s Hospital

By Princess Gabbara

IMG_4535The Micah Smiles benefit concert will take place Wednesday, April 30th at The Ark (located at 316 S. Main in Ann Arbor).

Chamber folk duo Acoustic Eidolon will headline the concert with a 20-year-old Mott patient set to open the show with two original songs. One is titled, “Don’t cry because it’s over, smile because it happened.” Mott’s music therapist Bob Hoffman and Mott’s Micah Smiles therapy fellow Meredith Schlabig are also scheduled to perform.

Proceeds will support the C.S. Mott Children’s Hospital’s music therapy program.

The Micah Smiles Benefit Concert is in memory of Micah Canvasser, who passed away just over a year ago from necrotizing enterocolitis, an intestinal disease that’s relatively common in premature infants, as well as End Stage Renal Disease, which causes permanent kidney failure that requires dialysis or a kidney transplant to live.

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Micah and his twin brother Zachary were born three months prematurely. While Zachary was able to go home after three months in the neonatal intensive care unit, Micah’s hospitalization continued. Micah was only 11 months old when he died.

“Honestly, the best way I’ve been able to cope and find peace is by giving back to others,” said Micah’s mother Jennifer Canvasser. “For us to be able to give back in this way is just incredible and beautiful. We’re so honored and blessed. There are really no words to describe it.”

Canvasser also said that she and her husband, Noah, integrate Zachary into the giving back process as a means of being positive examples of how to live effectively after experiencing a tragic loss.

“Zachary was always there even when Micah was in the hospital. He would sleep next to him,” she said. “The connection still lives on even though he’s no longer physically with us. He kisses Micah’s picture all the time and constantly asks about him. That’s another thing that helps me cope because I lost a son, but he lost his twin brother.”

“For us to be able to give back in this way is just incredible and beautiful. We’re so honored and blessed. There are really no words to describe it.”

Shortly after Micah’s death, the Canvassers started the “Micah Smiles Fund” in honor of their son’s memory by expanding the hospital’s music therapy program so that it could reach more children. To donate, please visit the Micah Smiles Fund’s official Facebook page.

In addition, they started the Micah and Zachary Giving Library, in which families with infants in Mott’s NICU receive one book each week to read to their children and to take home at the end of their stay. To date, the family has donated approximately 7,000 books.

Although this will be the first Micah Smiles benefit concert, the Canvassers hope to make it annual in hopes of spreading awareness about the positive effects of music therapy.

“Until you experience it first hand, you don’t realize how effective it is,” Canvasser said. “Music heals and brings calm when everything else in the world is spinning out of control.”

Tickets for the Micah Smiles Benefit Concert are $30-100 and can be purchased atwww.theark.org.

Princess Gabbara is an entertainment intern for The Ann Arbor News. You can reach her at pgabbara@mlive.com.

“Why is his hair so long?”

DSC_6643My two year old son has long hair. He is often mistaken as a little girl. This does not bother me, if it did, I would surely cut his hair. For over a year, many people have urged me to cut Zachary’s hair. They make jokes. They tease. They judge. They push. That’s fine, I don’t let it bother me. Very few people understand what my family and I have been through and that seemingly insignificant things – like a little boy’s hair – actually hold deep meaning to a mother who’s lost a son.

“Why is his hair so long?”

I recently posted some beautiful, special, precious photos on our Micah Smiles page. We delivered books for babies, for the NICU’s Micah and Zachary Giving Library. We went upstairs to the PICU, where Micah lived for nearly 10 months, and visited with Micah’s primary nurse, Nick. We showered Micah’s photo on the Wall of Courage with kisses and smiles, exclaiming how much we missed and loved our precious son. We headed up to the 12th floor to visit our friends whose 9-month baby girl is fighting a life-threatening battle.

I posted pictures of this deeply special, beautiful afternoon and in the comments:

“Why is his hair so long?” I responded, “because it is beautiful.”

But what I really wanted to say is…
DSC_3291Zachary’s hair is long because Micah’s never will be. When my son Micah was born, he had a head full of thick beautiful hair. When Micah became critically ill with a life-threatening disease, he lost all of his hair. Micah went bald. Seeing Micah bald, after he had a head full of gorgeous hair, was a constant reminder of how fragile and sick he was. As Micah’s health improved, Micah’s hair grew back and thickened. When Micah’s health declined, his hair fell out and thinned. IMG_6081

Micah’s last night here on Earth was spent in our arms. We held Micah tight and he knew he is deeply and forever loved. Before I gave my son a final kiss goodbye, I carefully braided and tied the hair at the nape of his neck together. I carefully took scissors and cut Micah’s hair to keep and treasure forever. On the one year anniversary of Micah’s passing, I took out that small envelope of his hair and kissed it, and longed to have my son back in my arms.

To me, Zachary’s hair is a symbol of his health. Zachary is incredibly healthy, vibrant and bright – his long hair testifies this. The tips of Zachary’s hair have experienced our entire journey: Zachary’s three-month terrifying NICU stay. Spending every day in the PICU with Micah. Bringing Micah home for the first time. Our first family walk together. Saying goodbye to Micah. IMG_2090

Before you judge the mother of a little boy with long hair, take a step back and consider the bigger picture. What has this family been through? What has this little boy been through?

Why shouldn’t his hair be long?

Does it surprise you to know that a little boy’s hair could hold such deep, precious, significant meaning to a mother?

Blood Donors and Breast Milk Donors: Lifesavers

My son Micah had a long, complicated hospitalization, during which he received 211 units of blood. That is an extraordinary amount of blood, especially for an infant over the course of just 11 months. I am forever indebted to the generous blood donors who saved and extended my son’s life. IMG_6190

During Micah’s hospitalization, Micah’s care team made it very clear that the benefits of Micah receiving someone else’s blood outweighed the risks. Micah’s hospitalization demonstrated to me the life-saving power and healing properties of blood transfusions. I have deep admiration and sincere appreciation for blood donors. Blood is one of the most incredible gifts you can give to someone in need.

Micah was born three months prematurely. Human milk is essential to the health of premature infants. When mother’s own milk is unavailable for premature infants, pasteurized donor breast milk is the next best option. Yet, most children’s hospitals and neonatal intensive care units do not prioritize human milk as a vital, life-saving intervention for fragile infants.

While healthy full-term infants can metabolize infant formula, the risks of formula for our most premature and vulnerable infants are profound. For fragile infants, formulais often presented as a benign alternative when mother’s own milk is unavailable. When in fact, formula increases a premature infant’s risk of necrotizing enterocolitis and is directly toxic to their cells after digestion. Necrotizing enterocolitis (NEC) is a multifactorial intestinal disease that affects the bowels of premature infants. NEC causes an inflammatory process that can lead to intestinal tissue damage and death. NEC is infamous for it’s severe morbidity and mortality rates, with exceptionally high medical expenses that can range from $100,000 to more than $6.5 million. NEC cost Micah his life.

Blood transfusions are routinely provided to premature infants in need. The risks of blood transfusions for premature infants are often trumped by the immediate lifesaving benefits. Most of us can understand, appreciate and accept the power of blood donations for vulnerable infants in need. The barriers of blood transfusions for vulnerable infants in need are essentially nonexistent. Donor blood is valued and prioritized as the life-saving intervention that it is. Donor breast milk for premature and vulnerable infants in need is not sufficiently valued or prioritized. This must change.

Breast milk is critical for our most premature and vulnerable infants.

There are tremendous barriers that prevent fragile infants in need from receiving pasteurized donor milk. Here are some of the most dogged barriers I’ve witnessed throughout my journey:

  • Lack of full disclosure to families
  • Lack of knowledge or prioritization by clinicians
  • Indifference to the value of human milk that allows it to be interchangeable with formula for very premature and vulnerable infants

When I gave birth three months prematurely, I sat in the recovery area after my cesarean and begged for a breast pump. I had never even seen a breast pump. I just knew I needed to start making milk for my very premature twins. My nurse refused to bring me a breast pump. She said I’d need to wait until I got to my private room.

DSC_2976Hours later when I finally got my breast pump, I began the routine of pumping for 20 minutes every two hours around the clock. I didn’t make a single drop of milk in over 24 hours. My twins’ care team explained that if my milk didn’t come in soon, my babies would be fed formula.

But, wait a minute.

Formula and mother’s own milk are not the only two feeding options available for fragile, very premature infants. Pasteurized donor breast milk is the second best option for our most vulnerable infants when mother’s own milk is unavailable.

Why didn’t anyone tell me about pasteurized donor breast milk?

See the barriers I just listed? I tragically experienced them firsthand.

The use of formula for vulnerable infants has become commonplace in our hospitals. Indeed, there are rare circumstances when human milk is contraindicated for fragile infants, and in these rare circumstances formula is the safest option. An exclusive human milk diet is the safest, healthiest option for the vast majority of vulnerable infants.

It is unacceptable that families are left in the dark. The risks of formula to premature and fragile infants are often not disclosed to families, and the option of pasteurized donor milk is often withheld. Many mothers with full-term infants who have an oversupply of breast milk do not know that their milk is desperately needed by human milk banks. Human milk banks and milk depots provide pasteurized donor milk to our most vulnerable infants. IMG_1651

Scientific literature supports the use of pasteurized donor milk instead of formula for fragile infants in need. It is unacceptable that many clinicians and hospitals are indifferent to the tremendous nutritional, health, and cost benefits of human milk for their most premature and vulnerable infants in need. The evidence may not be flawless, but it is surely compelling enough that we must start doing what is best for vulnerable infants now. Sometimes all the evidence we need is right before our eyes.

Not every medical intervention will be based on double blind, randomized control trials. To my knowledge, there is no hard evidence that supports the use of formula for our most vulnerable infants without mother’s own milk. Hospitals give fragile infants formula because it is more accessible, convenient and affordable than pasteurized donor milk, which is a safer alternative for fragile infants without mother’s own milk.

The literature demonstrates that the safest, healthiest option for premature and vulnerable infants is an exclusive human-milk diet. Our fragile infants cannot wait around for more evidence, they need human milk now.

Are you ready to stand up for our most premature and vulnerable babies?

Join the NEC Society and the Best for Babes team for our first nationwide Miracle Milk™ Stroll on May 10th. We’re raising awareness, breast milk donations, and funds so that all of our premature and vulnerable infants can receive the Miracle Milk™ they desperately need and deserve. FB cover

Micah Smiles for Music Therapy

IMG_4535From the night that Micah and Zachary were born three months prematurely, songs and stories became a fundamental part of their lives. We played music and read books to the twins every day, especially when the boys were too unstable to be held. Bob Huffman, Mott Children’s Hospital’s music therapist, began visiting Micah and Zachary in the NICU, early and often.

My first vivid memory of Bob sharing his music with us was in Zachary’s room, when the boys were just a few weeks old. Zachary had been intubated for a week and was really struggling; I was deeply afraid for Zachary’s health and well-being. Bob played his guitar while I stood next to Zachary’s isolette. I held Zachary’s tiny hand and hoped with all my heart that both of my baby boys would be okay and come home soon.

When the boys were six weeks old, everything changed dramatically. Micah’s development of necrotizing enterocolitis meant that Micah’s struggles would be much more intense and severe than Zachary’s. Now when Bob came to visit our family, we asked him to play for sweet Micah. Micah was too sick for snuggles, skin-to-skin care, physical therapy, and intimate interactions. But, Micah loved music.

As Bob played guitar, and when we read stories, Micah savored the sounds by slowing his heart and breathing rate, grasping our fingers, and smiling. Songs and stories were the bridge we needed to build and sustain our bond with Micah throughout his intense hospitalization. When we could not hold or hug Micah, we could still sing and read with him. Stories and song were Micah’s source of peace, comfort and joy as the rest of his world spun around in utter chaos.

DSC_9622One day, Bob was in the middle of his music session when Micah’s central access line suddenly went terribly wrong. Bob continued to play as Micah’s entire care team frantically prepared Micah’s room for a sterile surgical procedure. They ushered Zachary and me out of the room, and then asked Bob to stop playing and leave the room, too. Bob asked to stay. Bob knew that his music would provide Micah with the peace and comfort he so desperately needed. They handed Bob a mask and he played throughout Micah’s entire procedure.

Months later, when we lost Micah, I didn’t know how to live. Without Micah, I couldn’t eat. I couldn’t sleep. I couldn’t talk. All I could do was cry. I needed ways to feel close to Micah. I wanted to give back to other families in Micah’s name. Noah and I considered everything that brought Micah joy. We wanted to find that one thing that brought Micah joy and then give it to other families to enjoy, too. One person stood out: Bob, the children’s hospital’s music therapist.

Micah demonstrated that music provides calm amidst chaos. Music transcends time, space and all barriers. That’s why we started a fund to help expand the children’s hospital’s music therapy program. We named it the Micah Smiles Fund, because of the incredible smiles that Micah shared with us as we showered him with music, storybooks and our love. Through the Micah Smiles Fund, we are able to share Micah’s love of music with other families, and that brings us a deep sense of peace.

Thanks to an incredibly generous community, the Micah Smiles Fund has raised more than $45,000. In January 2014, barely a year after our loss of Micah, the first Micah Smiles Music Fellow (a recently credentialed music therapist) joined the Mott team and is now providing the healing sound of music to Mott kiddos – in honor of sweet Micah.

We are holding a Micah Smiles Benefit Concert on April 30th at The Ark in hopes of continuing the Micah Smiles Music Fellowship in 2015. Please join us for a special evening full of music and love as we celebrate sweet Micah. The Benefit Concert will help to ensure the healing sound of music reaches more Mott families. All ticket proceeds go to the Micah Smiles Fund that fully supports C.S. Mott Children’s Hospital’s Music Therapy Program.

I hope to see you on April 30th!!