August is National Minority Donor Awareness Month. This national observance (first a day and then a week) was initiated in 1996 to increase our nation’s consciousness of the need for more organ and tissue donors from multicultural backgrounds. Starting this year, this nationwide awareness push to engage and educate multicultural communities about the need for organ and tissue donors has been expanded to encompass the entire month of August.
National Minority Donor Awareness Month honors communities of color who have been donors, and encourages others to register as donors. It is about empowering multicultural communities to save and improve the quality of life of diverse communities by creating a positive culture for organ and tissue donation. Although organs are not matched according to ethnicity, and people of different races frequently match one another, individuals waiting for a transplant will have a better chance of receiving an organ if there are large numbers of donors from their ethnic background. This is because compatible blood types and tissue markers (which are critical qualities for donor/recipient matching) are more likely to be found among members of the same ethnicity.
Marian and Leelan Ennis were excited to find out they were pregnant with their second child. Their family of three with Big Sister Marlee would soon be a family of four. Nevaeh was born in October 2017 weighing 9 pounds, 3 ounces and the family settled into their ‘new normal.’
However, their normal became a nightmare when Nevaeh went into heart failure at five months old. Marian remembers hearing Nevaeh cough in her nursery and it did not sound right. “We were lying in bed and looked at each other and said that was a really loud, strong cough. It actually really concerned us,” she said. The next morning the baby’s breathing seemed heavier than normal so they took Neveah to her pediatrician’s office and they were quickly sent to the hospital. “When she was first admitted it was a rocky road. We took everything day by day and minute by minute. No one on her medical team really new how things were going to turn out for Nevaeh – only time would tell,” Marian said.
On March 20, 2018, Nevaeh was diagnosed with Dilated Cardiomyopathy, which occurs when the heart becomes enlarged and the pumping chambers are not able to work as they should. One in every 100,000 children under age 18 are diagnosed with this disease that can have both genetic and infectious/environmental causes. The majority of children diagnosed are under the age of 12 months. A heart transplant is the only avenue for long-term survival of a person diagnosed with Dilated Cardiomyopathy.
On Easter Day 2018 (April 1st), Nevaeh’s cardiologist met with Marian and Leelan. He explained their baby girl needed some help with her heart pumping. She was placed on an LVAD (left ventricular assist device). Marian recalls being shocked to see the large machine for the first time and the two large tubes sticking out of Nevaeh’s tiny body. However just one day after having the LVAD, Nevaeh was awake and alert; two days after she was able to have her breathing tube removed; and by day four she was playing with her toys and babbling. Nevaeh remained inpatient at Children’s Medical Center Dallas and hooked up to the LVAD for 35 days.
A transplant social worker at Children’s Medical Center Dallas had been working with the Ennis family since the time of the diagnosis. She had suggested they reach out to the Children’s Organ Transplant Association (COTA) to investigate the possibility of fundraising for the many transplanted-related expenses this family would be facing, and likely facing for quite some time. On April 2nd Marian called COTA learn more.
COTA uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. On April 5, 2018, the Ennis Family officially became part of the COTA Family, and a COTA fundraising specialist travelled to their Texas hometown to train the volunteers for the COTA campaign in honor of Team Neveah E. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses. The COTA volunteers quickly got to work in the Royse City area organizing and hosting fundraisers and promoting the online donation link provided by COTA.
Nevaeh received her heart transplant, and her second chance at life, on May 9, 2018. There were some complications after the heart transplant that included the right side of her heart not working as it should. This meant that Nevaeh was put on life support soon after her new heart was beating in her chest. She was kept on life support for three days and officially woke up for the first time on Mother’s Day.
Marian blogged regularly on the fundraising website COTA provided. Looking back now on Nevaeh’s journey Marian realizes it was a way to keep in close contact with their friends and family while she, Leelan and their baby were somewhat isolated at the transplant center.
Today Neveah loves playing with her sister, Marlee, and doing things other toddlers are doing. Nevaeh has grown quite a bit since her picture debut with COTA. She no longer needs a trach or a g-tube. She loves the outdoors -- specifically playing in water. Her favorite sweet treat is cinnamon rolls and her favorite color is red. Nevaeh loves to climb and shows no fear when obstacles get in her way. Nevaeh is a snacking queen who makes friends very easily. Her favorite toy is her baby doll, which she lets everyone know! She is sweet as sugar… as long as you do not take away her snacks or her baby doll. Nevaeh and Marlee are always taking care of each other. Anywhere Marlee goes, Nevaeh is close to follow.
August is National Minority Donor Awareness Month. Many COTA families are waiting for their children and young adults to be matched to an organ or tissue donor. You can visit www.RegisterMe.org to indicate your wish to be a life-saving donor. Every day 22 people die waiting for an organ transplant here in the United States. One organ donor can save eight lives.
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