Please Register to be a Life-Saving Organ or Tissue Donor
August 3, 2020 -- 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.
COTA’s Ennis family of Royse City, Texas, knows these facts all too well.
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.
“It was so amazing to see Neveah wake up after receiving her gift! She started out on 21 different medications. After two weeks it was down to 13 medications and the time came to try and remove her breathing tube. The first attempt was unsuccessful. Nevaeh turned blue and the breathing tube had to be put back in. After a total of three failed extubations we had to look into other options for her.
A tracheostomy was the best option if we wanted her to get out of the hospital and be better able to develop her motor skills. Being intubated really restricted her movements. On June 14, 2018, Nevaeh received a g-tube and trach. She came out of surgery smiling and super happy, and all she wanted to do was touch her face!
On July 11th after getting trained on how to care for Nevaeh’s trach, she was transferred to Our Children’s House, which is a rehab facility. This was a very necessary step that had to happen before we could bring her home. She was successful in being weaned off continuous feeds and even started getting weaned off of the ventilator.
Being able to have all of the amazing and supportive people working on fundraising for COTA in honor of Neveah has shown me how amazing life is. Then when I think about the family who donated their child’s heart to Neveah I am even more amazed and thankful. On August 7, 2018, we finally got to bring Nevaeh home. Of course after everything Nevaeh had been through it was very scary to just have home health nurses help out instead of a full pediatric cardiology team. Our first day at home was overwhelming because Nevaeh was still withdrawing from the pain medications she had taken in the hospital and at the rehab facility.
We did OK at home for a few days, but on August 14th Nevaeh’s transplant team admitted her to the hospital because she had caught a cold and was having a rough time getting over it. It took about two weeks for her to get completely over the virus. After that Nevaeh seemed a lot livelier and within a few weeks she had learned how to sit up, give high fives and had her first two teeth cutting through. She also moved up to 10 hours off of the ventilator each day and she opened her mouth for the first time since the transplant.
October 13, 2018, was Nevaeh’s first birthday. What an amazing miracle it was for us to actually get to celebrate this milestone. We had a very small birthday celebration with just immediate family due to Nevaeh being immunosuppressed. But we did take a live video so friends and family members were able to watch as well. She did not know what to think of the icing -- it was the cutest thing. Another milestone? December 7thwas Nevaeh’s last day on the ventilator!
May 9, 2019, was Neveah’s First Heartiversary. She is able to vocalize. Her laugh is so beautiful and cute. She has become much more mobile and rolls all over the place. This past year has been such a blessing and I thank God every day for the family that chose to donate life to a complete stranger. The greatest hero we will ever know is the donor who saved our daughter’s life. Because of receiving the gift of life, Nevaeh continues to make so many strides. Life with Neveah is full of ups and downs, but we are so blessed to be able to have a second chance at life with her.
When Marian thinks back to the scary days of being inpatient with Baby Neveah, she tearfully remembers how many of their friends and family members were back home praying, helping with Marlee and working with COTA to raise funds for mounting transplant-related expenses.
Marian and Leelan said, “The Children’s Organ Transplant Association (COTA) has been such a supportive and amazing team of people for our volunteers and for our family. They never cease to amaze us! Any time we have a question someone at COTA is able to answer it, and whomever answers the 800 number always asks how Nevaeh is doing. COTA kept in close contact with us during the many days Nevaeh was inpatient always making sure our needs were being met. It is very reassuring that COTA contributions are helping with the many hospital and medical bills we have now and will continue to do so … for a lifetime.”
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.
As Nevaeh continues travelling her transplant journey, she always has a big smile on her face, sings joyful songs and shows everyone how loving, caring and strong she is. Nevaeh has given hope and inspiration to so many people. Marian and Leelan are extremely grateful for the decision made by the donor family which as given Nevaeh an amazing second chance at life. “There are simply not enough words to describe the amazing strength and courage that comes from Nevaeh nor to describe our heartfelt appreciation for her donor,” Marian said.
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.