Matthews, North Carolina (NC) - Twins, one twin with Trisomy 13 and Alobar Holoprosencephaly, proboscis & cyclopia

Parents: Valerie and Eugene Samuels
twin daughter: Gina Rosetta Samuels
surviving children: Kenneth 16, Justin 14, Caira 9, Rachel 5, Julia 3 (& Gina's twin)
samuelsvr@yahoo.com
publishers link for "Always My Twin" -
A Mother's Heart Ministry

My story to share about Gina,

On April 20, 2002 I gave birth to twin daughters Gina and Julia Samuels. In my 5th month of pregnancy with our twins, I was told that Gina (Baby A) appeared to have some problems. At first my doctor told me it looked like she had an enlarged kidney. At my next visit another doctor told me about what looked like fluid on her brain. I had refused amnio (would have had to have it performed for both babies) and abortion was out of the question for us.

I knew that no matter what condition Gina had, we loved her, she was our daughter, and we were going to carry her and love her all of her life. At the time I was unaware of support for others who have been in this situation. Looking back, I know I could have used more support.

My faith in God sustained me and helped me keep some measure of sanity, for it was something people did not feel comfortable discussing with me. After all, we had 4 other healthy successful pregnancies and children, so my friends and family probably expected everything would be fine.

I carried the girls to term (36 weeks for twins). Labor began late on April 19, 2002. Early on April 20th, they were born by c-section due to Julia's position and my previous c-sections. Gina was born first. She weighed almost 4 pounds and was 18 3/4 inches long. Julia weighed about 6 pounds and was 20 inches long. Gina weighed less because of her smaller head size. It was not until after her birth that she was diagnosed with Trisomy 13 and Holoprosencephaly. She had been intubated immediately after birth, and was on life support all the 9 days of her life. She was born with a probosis and could not breath on her own, having no nose. She also had cyclopia, which is a condition that is still hard for me to process.

She liked to be cuddled, and holding her was a pure joy, for she was precious to me and I know she was precious in the sight of God. Although it's been almost 4 years, it is still painful to remember the feelings of such love and deep sorrow, at the same time for my twins. I did not know these two extreme emotions could be felt at the same time. Gina has been worth every tear, every smile, and every bit of the pain.

I am comforted by the fact that God handpicked me to carry this child, love her and care for her all of her life, no matter how long or short the time we had. Gina died in my arms on April 29, 2004 at 4:00pm. My grief was complicated by my conflicting feelings of caring for and loving my surviving newborn twin, as well as meeting the needs of our 4 other children . All of this while heavily grieving the unbelievable reality that our baby had died.

As the cars pulled up to the burial site, for her memorial, 2 or 3 beautiful peacocks (from the cemetery grounds), walked right up towards us and passed by where she was to be buried. It was as if God was publicly declaring and confirming to all, the beauty of this child in His eyes. To this day, peacocks are special to me, as I like to collect peacock items and wear peacock pins occasionally. She was our beautiful baby girl, our precious daughter, loved by her sisters and brothers, family and friends. She is loved by God.

In the months after her death, I threw myself into trying to understand the conditions she had. I had never heard of Trisomy 13 (or 18) before. I had only been familiar with Trisomy 21. I could not even pronounce Holoprosencephaly, let alone understand it at that time. After several weeks and months, I knew everything to know about it. During that 1st year after her death, I worked on a scrapbook in her memory so that I could share her life with the rest of our family, and so that she would never be forgotten in our home.

Today I run a support ministry called "A Mother's Heart" along with a dear friend and NICU nurse (Angela Wiggins). Angela's nephew Khalil died at just 2 months old in 2003 due to a diaphragmatic hernia. Along with 4 other women, we serve families in our church and in the surrounding communities and on the internet.

Recently, I wrote a children's book called "Always My Twin" for young children who have experienced the death of their twin sibling, I also wrote it as a tribute to my daughters Julia and Gina, and the many children who have died due to disorders such as Trisomy 13, Trisomy 18, Trisomy 21, Holoprosencephaly, Anencephaly, etc.. those that the world may feel are not "fit" to be born or live. I hope my book shows others that these children are cherished, loved and deeply cared for and treasured, even after death (should that occur). It's a book that can be used in families with surviving siblings where a non-twin child has passed away as well. All children are gifts from the Lord. I thank God for the gift of my Gina.

Blessings,
Valerie Samuels

publishers link for "Always My Twin" -
"Always My Twin" can also be ordered directly from me by contacting me at samuelsvr@yahoo.com