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Holding On to Hope

Just hours before the birth of our daughter, the hospital scene looked like any other: Swarms of family members nervously passed the hours in the waiting room; a nurse did what she could to make the expectant mother comfortable; a doctor watched the sequence of events and advised accordingly; an attentive father-to-be held his wife’s hand. In the labor/delivery room, we dimmed the lights, turned on our Frank Sinatra CD, and made the room as relaxing as possible.

We were anxious to meet Hope Elizabeth Pastusek...because we knew our first meeting would probably be our last.

Our first glimpse of Hope

Eight months before, Anna had just begun her second year of teaching when she discovered she was expecting our first child. Like all parents, we had hopes and dreams for this baby, and we looked forward to the first sonogram in October.

What should have been an exhilarating experience of seeing the first images of a tiny, moving image on the screen turned into the beginning of a journey no one is ever prepared to make. The sonogram showed a large cyst on the back of our baby’s neck. The cyst itself was as large as the baby’s head. A definite diagnosis couldn’t be made until later in the pregnancy, but several possibilities were mentioned:

Turner Syndrome, a condition which only affects girls and results in short stature and some physical anomalies, is not always fatal.

Trisomy 18 (Edwards syndrome) results in an extra 18th chromosome and is almost always fatal to the baby.

Triploidy, an even more dangerous condition results in a third chromosome at all 23 positions and would be fatal to the baby and could be lethal to Anna, too.

To determine the exact condition of the baby, an amniocentesis test would have to be performed. This couldn’t happen until all the membranes had fused. During the months of waiting for the opportune time to do an amniocentesis, the Christmas season came. We were sitting in church during the first week of Advent, watching the candle being lit, when I (John) suddenly knew what I wanted to name our baby. I turned to Anna and said, “If it’s a girl, I want to name her Hope.”

Dozens of sonograms later—literally, dozens—the pregnancy had reached the point of doing the amniocentesis. It was now January, and Anna was in her sixth month. All those sonograms had confirmed one thing—our baby was a girl. We had come to terms, as much as possible, with the truth that this was not going to be a normal pregnancy and birth, no matter what the test results were. The questions were whether our baby would survive birth, for how long, and what her quality of life would be.

But even before we knew the results, we knew one thing was absolutely sure: We would give this baby girl a chance to be born. We would let her live as long as God allowed. The medical professionals made it clear that we could abort our baby because of the obvious abnormalities. Some people call it “saying goodbye early.” But how could we bear to say goodbye early when we never even said hello?

In our hearts we knew Hope was a gift from God, a gift to us, and we would cherish her as long as we could, even if it meant we only knew her for the months she was in the womb. So every time abortion was mentioned, we answered no. Hope was to be our firstborn, and we would do everything we could to ensure she had the chance to do just that—to be born.

The next stage of preparation

The test confirmed Hope had full Trisomy 18, meaning the three chromosome abnormality affected every cell of her body. Full Trisomy 18 is “incompatible with life.” There was no denying it as we looked at a digital print-out of our unborn daughter’s chromosomes: 23 sets of neatly paired chromosomes, except for position 18 where a fatal third chromosome upset the order and balance. No one on either side of our family ever birthed a child with Trisomy 18, but our doctor, Salvatore LoCoco, explained Trisomy 18 can happen to any baby, any pregnancy. And it happened to our baby.

Now we had some decisions to make. Some Trisomy 18 babies survive birth and live a few hours or a few days; very few survive longer even when given a high degree of medical intervention. We had no way to know how much time we would have with Hope after birth—a few minutes, a few days? We prayed for just enough time to be with her and to let our parents meet her.

Friends asked if we were going to decorate a nursery. We chose not to, because if we couldn’t bring Hope home, we would come home with empty arms to a beautifully decorated baby’s room. Instead, if Hope came home for a time, friends promised to bring newborn clothes, diapers, and baby items at a moment’s notice. A neighbor would lend us a crib and baby furniture.

But nothing was harder than putting together Hope’s funeral plan. We wanted to honor Hope’s short life and to allow ourselves, as well as our family and friends, some measure of closure. But Anna couldn’t face going to the funeral home, seven months pregnant, to plan her baby’s funeral. So John handled all the arrangements, taking his brother along for emotional support. At first, the funeral home director didn’t know whether or not to believe John. Most babies’ funerals, tragic as they always are, tend to be planned after the birth, not before.

As for the labor and delivery plan, our doctor advised a “care and comfort” approach for bringing Hope into the world. We would spend whatever time we could with her, but we would not subject her to overly-zealous medical intervention just to keep her alive on machines.

One of the best decisions we made was to enlist the help of a local photographer, Angela Majerus, who volunteers for Now I Lay Me Down To Sleep, a foundation specializing in “remembrance photography.” We would have enough to think about when the birth came without worrying about who brought the camera and if the battery was charged. Now we would be free to focus completely on Hope and our time with her.

Waiting to say hello

As the last months of the pregnancy drew to a close, March 26 was set for Anna to be induced.

The day arrived. Such anticipation cannot be put into words. We were excited for the possibility of finally meeting the tiny person who had been with us all these months. We were terrified of the ending we knew would come. Anna had the usual apprehension of labor and all it involves. After 14-1/2 hours of labor, Hope Elizabeth Pastusek was born at 8:31 p.m.

John was amazed to witness the miracle of birth. Hope had Anna’s dark, curly hair. He cut the umbilical cord, and Dr. LoCoco put Hope into Anna’s arms. It was then that we realized we had never heard her cry. Hope had not survived the birth.

Though we were hoping for a live birth, just to have a few minutes with her before she breathed for the last time, we realize the way it happened saved us the pain of watching her die. Dr. LoCoco estimated she probably died an hour or two prior to birth.

So now, we began to do what parents have done through the ages, examining fingers, counting toes, marveling at the tiny, wonder-filled details of our newborn daughter. Her face was perfect, and her head was covered with black, curly hair that was soft and delicate, just like she was. She weighed 3 pounds, 10 ounces, and was 15-3⁄4 inches long. Her left foot was clubbed, and both forearms were missing the radius bone.

As Anna held Hope in her arms and John held them both, Dr. LoCoco baptized her, praying simply but powerfully, “Father, we claim her for Christ.” We chose Elizabeth as Hope’s middle name because it means “dedicated to God” and that’s exactly what she was—dedicated to God through this journey of raw emotion.

With about 40 family and friends in the waiting room, we let them come see Hope, first our parents, then our siblings, and then our friends. We wanted people to hold her, to have that connection with her, both at that moment and in the future, so they would remember he r, to o. It was amazing to share her and let everyone see what a beautiful little baby God had given us .

At 9:15 p.m., we brought in Angela to take the portraits we had so looked forward to keeping as our only reminder of Hope. She unobtrusively captured the most amazing expressions of tenderness and love. By 11:30 p.m., the pictures were finished, and we were both physically and emotionally drained. Everyone had an opportunity to be with Hope Elizabeth, and it was now just the three of us. How hard it was to let her go . . . and yet, she was never really there. Her sweet soul had been exploring the floors of Heaven for hours.

Cherished in our hearts

John’s grandmother has given us a priceless example of how to move through grief while never forgetting the life and presence of the precious little one who left too soon. Grandma Pastusek’s son, Wesley Eugene , drowned at the age of two. Even though he has been gone since 1942 , his picture is still displayed with the family portraits, and he is still talked about and remembered with love.

One day, we want our future children to know they have a big sister in heaven. We want Hope to always be part of our family, to be remembered and cherished. We’ll keep her picture s on the wall and her photo album close by. We’ll sit with our children as the years go by and show them the sister they have yet to meet.

Until then, we’re holding on to Hope with all our hearts. We don’t want to forget any part of our experience, not even the pain, because that would mean for getting a part of Hope. We are so thankful for the pictures which help us to remember.

In a normal conception, 23 chromosomes from the father and 23 chromosomes from the mother combine to create a baby with 46 chromosomes in each cell, two of each type. Each chromosome holds a particular “position” in the cell and carries certain genetic material. A trisomy occurs when a baby has three chromosomes in one position in stead of two.

he most common trisomy is Trisomy 21 (Down syndrome) . Trisomy 18 , or Edwards syndrome, is the second most common. The genetic material from the additional 18th chromosome can cause heart defects, digestive system anomalies, kidney or intestinal abnormalities, clenched hands, rocker bottom feet, severely delayed growth, small jaw, and misshapen or missing bones. Trisomy 18 occurs in about 1 of every 3,000 live births. Full Trisomy 18 (having a third 18th chromosome in every cell of the body ) is fatal, with most babies dying before birth ; those who make it through birth typically live only a few days. A very small number of babies (less than 10 %) live longer.

Source: Trisomy 18 Foundation, www.trisomy 18.org

Article Link: http://ccmusa.org/read/read.aspx?id=chg20080401
To reuse online, please credit Challenger, Oct-Dec 2008. CCMUSA.