- Associated Press - Wednesday, February 3, 2016

UNIONTOWN, Pa. (AP) - Eighty-nine minutes doesn’t seem like a long amount of time, but it was a lifetime for Daniel John Dice and his parents.

Eighty-nine minutes of joy. Eighty-nine minutes of sadness. Eighty-nine minutes of laughter. Eighty-nine minutes of tears. Eighty-nine minutes filled with infinite love. Daniel lived just 89 minutes on this earth, but he gave his family an eternity of memories.

“We read to him, prayed with him. We sang ‘Happy Birthday’ to him. We baptized him,” said his mother, Nicole Dice. “He never left our side.”

On Nov. 6, 2015, Daniel was born at 8:38 a.m. at the Family Beginnings Birthing Center of Uniontown Hospital, the son of Bill and Nicole Dice of Uniontown. By 10:07 a.m., Daniel was gone, succumbing to a fatal form of dwarfism known as thanatophoric dysplasia.

The couple, high school sweethearts and married for nearly eight years, was so excited when, after seeking fertility treatment, they discovered in March they were expecting their first child.

“Initially everything looked good,” said Nicole. “I started keeping a journal from the beginning of my pregnancy up until today. I keep it for him.”

It was during Nicole’s 20-week sonogram at her obstetrician’s office that abnormalities were discovered.

“That day they noticed his limbs were short and there was fluid on his brain. We were told this could be a form of dwarfism and the fluid could mean the child may have disabilities,” Nicole said.

As a special education teacher herself and Bill a physical education teacher, the couple was prepared to accept the possibility their child may have special needs.

Her physician, Dr. Rod Hojat of Southwest Women’s Health Care in Uniontown, sent her to a neo-natal specialist at West Penn Hospital. It was there Bill and Nicole discovered that on the spectrum of dwarfism, their child had the fatal form, his chest cavity so small; his lungs would be unable to develop.

“With this being severe, I had a likelihood of miscarrying,” said Nicole. “I had the option of terminating the pregnancy because the baby would not survive. I said that was not an option. When God takes this baby then God takes this baby.”

Although encouraged by the staff at West Penn Hospital to allow them to take over her difficult obstetric care and delivery, Nicole opted to continue with Dr. Hojat and the staff at FBBC.

“(Dr. Hojat) wanted to know how he could make this pregnancy easier. He asked me what would make me feel more at ease and I said, ‘to come in every week and hear the baby’s heartbeat,’” Nicole said.

That accommodation was made, without question. Each week, Nicole and Bill would go and listen to the baby’s heartbeat, never knowing from week to week if perhaps she may miscarry or the baby would be stillborn.

“At week 24, I gave it to God. We decided from then on to do everything we could as a family, to make as many memories as we could,” Nicole recalled.

They read, prayed, recited devotionals, sang and talked to their unborn child.

At 26 weeks, Bill and Nicole discovered they were having a boy and that’s when they chose his name. Daniel after Bill’s father and John after Nicole’s grandfather.

“From then on we spent time talking to him by name,” said Nicole. “I got to feel all his kicks and moves and my husband got to feel all his kicks and moves.”

In October, the couple was told they would need to put plans in place for a Caesarian section delivery of Daniel at 36 weeks—which meant they would not only need to prepare for their son’s birth but his death as well.

“I was adamant we would stay local. We just wanted to be with Daniel with whatever time we had,” said Nicole.

Prior to his delivery, the FBBC nursing staff helped them prepare. The couple met with the delivery nursing staff and a grief nurse because they knew they would need both.

“It was so important for us to hold our son for as long as he had life and we wanted nothing intrusive. Dr. Hojat and the (FBBC) staff did everything they could to make that possible. They took our son and treated him as if he was their own child. Everyone was so sympathetic and so compassionate about our baby,” Nicole said.

Nicole and Bill arrived at 5 a.m. on that Friday morning and were immediately hooked up to a fetal heart monitor so they could listen to Daniel’s heartbeat in utero, a strong 155 BPM.

“The whole time they were doing the C-section. I was just praying and praying that we would have some time with him alive. That he wouldn’t be still born,” she said.

Just before the medical staff had Daniel completely out, he let out one little cry — the only sound his parents would ever hear from their son.

It was just one of the many memories the Dices have of those 89 precious minutes while Daniel’s heartrate continued declining.

“Going into it we didn’t know if we would have anytime at all so having those 89 minutes was a true blessing,” Bill said. “It was truly amazing just to get that time considering we thought we wouldn’t have any time. So that seemed like an eternity.”

The hospital then gave the family time together to bond and to begin the grieving process.

“The hospital let us spend time with Daniel. At no point did they try to take him away from us,” said Nicole.

This time, the couple explained, became very important to them for their journey of grief and healing.

Nicole said she felt faith surrounding her and God’s blessing on her.

“I thought, ‘Okay God, you’re giving me this blessing of peace.’ God sent an angel down or Daniel’s spirit to show me it’s all okay,” she said.

Bill and Nicole prayed and sang Daniel their two favorite hymns before leaving him at the hospital.

From that short period of time with their son, the Dices have dozens of photographs that chronicle his short, yet impactful life.

“He was only on this earth for 89 minutes but he touched so many people,” said Nicole. “Our faith in God, that Daniel is safe and healthy, and the amount of love people have shown for Daniel; to have loved him so much and to have so much compassion given to us. I focus on that on my bad days,” said Nicole.

The two things Nicole and Bill credit with getting them helping through the unimaginable pain of losing their newborn are faith and community.

“Once we had been told Daniel had the fatal form of dwarfism, there were so many people praying for him and us. This community supported us. People we didn’t even know said they were praying for Baby Dice or Daniel John,” Nicole said. “People would see us and how we were carrying this faithfully and trusting God. Seeing us fully in love with this baby seemed to make others appreciate their lives.”

The grief is a day-to-day struggle, Bill said, but the encouragement comes in the form of what the couple sees as Daniel’s purpose, bringing people to God.

“It’s been really humbling for us to see the amount of people come together with prayers and thoughts and just wishes. It’s like wow, how many people (Daniel) has touched and how many people have gone to church to pray for him. It’s helped to know he has brought so many people together,” said Bill.

With grace, Bill and Nicole walked the path with their son and now they want to continue to deliver a message of hope to parents who face similar odds.

“It’s definitely brought us closer together. Because how do you get through something like this without moving closer together?” Bill asked. “We just hold each other and we’ve done a lot of praying together which we had never done before. Daniel’s diagnosis really brought us closer together spiritually.”

Thanatophoric dysplasia is caused by a gene mutation and not the result of family history or disorder. Still, because there is very little information available about thanatophoric dysplasia, Nicole is starting the website ourangeldaniel.com in memory of her son and to help families understand the diagnosis and their options. She also hopes to raise funds to provide the hospital with “cuddle cots,” for stillborn babies or those that die after childbirth. These devices that will keep the baby’s body cool and allow parents the opportunity to bond with their newborn and begin the grieving process.

“How blessed we feel that we carried out the pregnancy. We got to deliver him and hold him in our arms and even if he would have been still born we still got to hold him. Because so many people that get a fatal diagnosis abort, I’m hoping that people who see this think, ‘I’m going to give my baby a chance. I’m going to give my baby life. I’m going to let God decide and carry out his plan of what my baby needs to do,’” she said.





Information from: Herald-Standard, https://www.heraldstandard.com/

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