Human Interest

‘Jesus made you perfect’: Evelyn, who had Trisomy 18, has died after three years of love and life

When Hannah Sudlow was pregnant with her first child, Evelyn, a doctor scheduled an abortion without her consent after Evelyn was diagnosed with Trisomy 18. Considered “incompatible with life,” the diagnosis of Trisomy 18 scares a lot of parents into abortion, but Sudlow and her husband Craig refused to give in. Instead, they welcomed their daughter for exactly who she was and accepted her and her medical needs with unconditional love.

Evelyn passed away in March after three and a half years of life outside the womb. She left behind her heartbroken parents and her two younger siblings, but she also left behind a lesson and a legacy for the rest of us: all children should be welcomed, celebrated, loved, and accepted for exactly who they are.

Sudlow said that while she was pregnant, the doctor told them, “Basically everything is wrong with this child. She has cysts on her brain. She is four weeks behind on her growth. She has intrauterine growth restriction, a hypo-plastic left ventricle, a single ventricle heart. She is missing half her heart. She has a cleft palate, clenched fists, and oh, by the way, two clubbed feet.” When it was discovered that Evelyn had Trisomy 18, the doctor at Maternal Fetal Health informed her that a doctor from her OB/GYN office had informed him that Sudlow would be terminating the pregnancy and that he had already scheduled the abortion appointment.

Sudlow was shocked and said she would not be having an abortion. Her OB/GYN then refused to provide her with further treatment.

“He said, ‘You can’t keep her. I don’t think you know how serious this is,’” said Sudlow.

Sudlow and her husband would not be bullied. They found a new doctor and moved forward with hope, love, and prayer. As the pregnancy progressed and Evelyn grew, some of her health concerns disappeared. When Evelyn was born in October 2016, her mother wrote on Instagram, “So enamored with this little angel. You are our dream come true, Evelyn Grace! God has done a beautiful work, that our souls know very well.”

Thanks to doctors who valued Evelyn’s life, she thrived. She became a big sister twice over, she met milestones her parents were told she never would, and she laughed and loved. Though no one could predict how long Evelyn would live or what her future would look like, it was clear that she was happy and that she was well-loved.

In February, Evelyn became ill with a virus and was hospitalized. She faced numerous challenges. As she overcame one, another seemed to rise to take its place. Still, her parents showed gratitude and love for their daughter.

 

“This sweet little girl is my heart and soul in another body. Evelyn you are a gift to us all and such a fighter. Jesus, continue to shine your glory,” wrote Sudlow. “Evelyn is a light for YOU!!”

Then on March 20th, after weeks of fighting, Evelyn passed away. In her grief, her mother shared the news on Instagram:

Evelyn Grace Sudlow went home to be with her Savior late this morning. I have no words. But I know she is healed and whole in the arms of her savior. Evelyn, an eternity wouldn’t be long enough with you. Thankfully, I will have that one day.

You were a perfect gift beyond what we could imagine for 3 1/2 years. My best friend. My heart outside of my body. My purpose.

My heart is crushed. Joy will come, but for now there is a lot of sorrow. Jesus made you perfect, and compatible with life and love. I ache to see you again in heaven one day.

Even in her own pain, Sudlow saw the needs of others and began to gather all of the unused medical equipment in their home to donate to other families. Other children needed the equipment to survive, and Sudlow chose to give to them. She knew Evelyn would have wanted that – and she knew God would too.

In the nearly three months since Evelyn’s death, Sudlow has kept her daughter’s memory alive for Evelyn’s younger brother and sister — and for everyone else as well. It’s important Evelyn’s life is remembered, not for the struggles and challenges, but for the joy and beauty.

READ: Medical community makes same mistakes with Trisomy 18 today that they did years ago with Down syndrome

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Today I made a phone call to a place nearby. The conversation went like this: “Hi! We are coming tomorrow, & have never been. I’ve heard strollers aren’t allowed. My daughter is three & completely disabled. She’ll need her stroller for her feeding pump & everything else. How can we go about it? Is that okay? Is there any paperwork I need?” The lady on the line eagerly & kindly told me where to go when we arrived, how to pick up an accessibility pass at the location, & no one will question our stroller. As she said this, I began to cry. A shaky “thank you” made it’s way out. I wasn’t expecting a different answer, I knew they’d accommodate to those with disabilities. But, my tears surprised me. I realized I began to cry from the words I just said. Three years into this, & even those words can still shock me; this is my reality. My daughter is turning three & she is completely disabled. I don’t view our story or life like that daily. In fact, I see all that Evelyn can do. But when conversations like this take place every so often, I am always not expecting the emotional toll it has: I have an atypical toddler with a life limiting diagnosis. I then continued to cry some more as I remembered what I was doing three years ago today. Heading to the hospital to get checked in to prepare for Evelyn’s birth the next day. Not sure if we’d have just minutes or years of moments with her. Certainly not thinking we’d have 3 years. I cried more because it’s been a long three years. Full of highs & lows, emotional cliff hangers, more life & death moments than any parent should have to walk through. And then I cried some more because it’s been a beautiful three years. Three years of watching my Evelyn grow stronger each day. Three years of learning from her. Three years of seeing life through different eyes. And man, nothing compares to my love for my Evelyn. Then, as I do every year near her birthday, I cried more. Wondering where we will be next year on her birthday. Because we never know. Then I took a deep breath, wiped my tears, & continued driving home. Thankful for the tears. Thankful for my Evelyn; thankful she keeps my heart soft & tender. I can’t wait for tomorrow♥

A post shared by Hannah Sudlow✨ (@hannahsudlow_) on

 

“Evelyn, you were nothing short of a gift. My gift of grace. Heaven on earth. I miss you beyond what I can say,” wrote Sudlow. “We were side by side every moment and hour of the morning and night for the last 4 years, including you in my womb. What a gift that was. I gave you all of my heart daily. Knowing one day this would likely happen, and a huge part of me would go to heaven with you. And I’d do it all over again.”

Sudlow wants every parent who learns of a diagnosis for their preborn child to remember that though it feels like a tragedy, the “only tragedy would be never meeting Evelyn at all.”

Looking back on those last days in the hospital, Sudlow wrote, “I remember at one point I saw my husband suddenly sobbing one afternoon. We took turns breaking down; I just thought this was his. When we both folded into the twin sized couch to sleep that night he asked me if I knew why he was crying. Craig then told me, ‘One of Evelyn’s eye patches fell off. Her eyes look so awful, Hannah. But I couldn’t look away, because that’s my baby.’ A few days before, I had written a post to Evelyn, telling her also that I wouldn’t look away.”

Our society must also not look away from children who are different, for whom doctors advise abortion. Every child is a gift and every child deserves the chance to live out every second of her God-given life and to be loved unconditionally by her parents.

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