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In 2009 Scott and Diane Peterson of Champlin, Minnesota were overjoyed with the news that they were expecting. Immediately they fell in love with their little one and looked forward to the day when they could hold their baby. Fourteen weeks into the pregnancy, they were given the devastating news that their daughter, whom they named Grace, had a fatal genetic disorder. As they vowed to give their little girl every chance at life, they held onto their faith to sustain them.

During a routine ultrasound on April 2, 2009, the technician saw something out of the ordinary on the monitor screen. “She said, ‘I’m going to have the doctor talk to you about that’ and she excused herself from the room,” Scott remembers. “We went from being really excited about watching the baby move around to, all of a sudden, dead silence,” Diane remembers.

The doctor informed Scott and Diane that they found indicators of Trisomy 18, or Edwards Syndrome, a genetic disorder in which the baby has a third copy of genetic material from chromosome 18, instead of the usual two copies. “The baby had fluid at the back of the neck and a bubble outside of her belly that you could see on the ultrasound,” Diane says. Some of Grace’s internal organs, including her intestines, liver and kidneys, appeared to be forming outside of her body in an omphalocele (a hernia at the navel). “We were absolutely shocked,” Scott says. “We expected everything to be normal and perfect.”

Prior to Grace’s diagnosis, Scott and Diane watched a video on www.youtube.com called “99 Balloons” about a baby boy named Eliot who had the disorder. “It’s such a moving video,” Diane says. “We went back to that when we got home and of course we balled our eyes out. But we also saw how much joy the parents took out of the short time they had with their baby and it made a huge difference; it was a huge comfort to us.” Scott and Diane were determined to do the same: to treasure every moment they were given with Grace both in the womb and out.

One day Scott came across Bella Angel 3D/4D Imaging in Maple Grove, Minnesota. After stopping in and meeting the owner Brenda Renzaglia, he brought a brochure home to Diane. “While ultrasound pictures you get at the doctor’s office are often hard to see at first, I showed her a brochure of the 3D images and we were both amazed at how clear it was. I had to talk her into it though,” he says. Diane was reluctant at first. “I was worried about what we were going to see due to the diagnosis we had. But we made an appointment,” Diane says. On the way to the appointment, they decided to call some family and friends and invite them to be a part of the 3D ultrasound. “Ten people showed up because they wanted to meet her too,” Scott says. Even Scott’s grown daughter who lives in Oklahoma was able to be a part of the day via the Internet.

“It was the most amazing day,” Diane says. “As much as I was afraid of what we’d see and so worried about having people there, I could not have been happier. We just laughed and cried as we watched her move around – she was amazing.” Scott and Diane were thrilled that their family and friends were able to take part in the special day as well. “It wasn’t like she was just a pregnancy anymore – or just a diagnosis – all of a sudden she was this little baby that everyone was getting to know,” she says.

The Peterson’s were also thankful for the relaxed and welcoming environment Bella Angel Imaging offered. “At the doctor’s office there are often a lot of pressures to end the pregnancy when you have a fatal diagnosis,” Scott explains. “But the beautiful thing about this ultrasound is that it’s all of you watching the baby and there’s no one there to give you bad news or to pressure you. No one talking about what is wrong – you’re just looking at all the things that are right. It’s very beautiful.”

“I think that how excited new parents are to watch their newborn little baby move around – that’s how excited we were that day. Watching her move around and seeing what she looked like and watching her little personality. It was so much fun,” Diane says. Over the course of her pregnancy, the Peterson’s had four 3D ultrasounds taken all of which were recorded on DVD – each time treasuring the special moments with their little girl.

During her time in the womb, Grace had many ups and downs. “The doctors explained to us that, not only was her body kind of messed up because of the extra chromosome, the placenta was too and so was the umbilical cord,” Diane says. As a result, Grace wasn’t receiving adequate blood flow through the umbilical cord. “Because she was behind in her development, they were not able to deliver Grace in order to nourish her. We just had to hope and pray that she would keep going and that things would change with the umbilical cord.”

For nine weeks Grace’s status went back and forth between good or stable to uncertain. “She rallied three or four times, it was a miracle,” Scott says. On July 23, 2009, Scott and Diane went in for a routine 30-week checkup but the doctor wasn’t able to find Grace’s heartbeat. Diane was induced and gave birth to Grace Luella Peterson the next day. Scott and Diane were able to spend time with their precious, stillborn daughter on Friday and Saturday after she was born. “Our family came in and we had a chance for everyone to hold her and get some pictures,” Scott says.

[Pull Quote: “[The labor pains] paled in comparison to leaving our little girl behind at the hospital. No mother should have to leave a hospital with empty arms.”]

Almost immediately after Grace passed away, Scott and Diane decided to set up a memorial in her honor. Because they were so impressed with Bella Angel Imaging and treasured the happy memories they made there, watching Grace in 3D, they decided to focus their generosity on that mission. They requested that in lieu of sending flowers, family and friends give money toward a trust that would allow other families to experience 3D ultrasounds. With their desire to give back, Sustaining Grace was born.

When parents are told their baby has a fatal diagnosis, Sustaining Grace provides them with funds to have non-medical 3D and 4D ultrasounds done. “If these parents are going to give their child every chance at life, we would like to provide them with the opportunity to watch them grow in the womb,” they say. Since 2009, Scott and Diane have been able to help 22 families all over the country. They’ve also helped families in both Canada and Scotland.

The application process for Sustaining Grace is simple: “We figure if they call us, they need it,” Scott explains. The money provided by the fund allows families to have two ultrasounds done. “We schedule one ultrasound and then another one three weeks later so they can see the changes and growth,” he says. The money also allows the family to receive a heartbeat bear keepsake. “We also pay for a teddy bear that has the baby’s heartbeat recorded in it. We have one for Grace and we cherish it.”

Scott and Diane’s favorite part of their Sustaining Grace mission is getting to know the families they are able to help. “It’s just been amazing,” Diane says. “We love getting to know the families a little bit. Usually there’s not a lot of involvement on our part except maybe exchanging phone calls and emails but that in itself means a lot to us.”

One of the first families that Scott and Diane worked with live in the Twin Cities and they were able to meet in person. Shortly after the first 3D ultrasound, the mother was taken to the hospital because she had preeclampsia. “We went and visited her at the hospital. Ultimately because of the health of the baby and mother, they induced labor.” Scott and Diane were invited to be a part of delivery and were able to witness the birth of Elijah who had a chromosome disorder called tripodi. “The doctors and nurses kept saying he would not be born alive but he came out and as soon as those little arms and legs started going, we all started balling!” Baby Elijah lived for two hours. “Scott and I got to hold him, give him a bath and get him dressed. It was the most amazing experience in my life apart from our own daughter’s birth,” Diane says.

As they look forward, Scott and Diane want to help one family at a time, wherever that may be. “We need the word spread and for people to keep it in the back of their minds, if they hear of someone in a situation like that,” Scott says.

The Petersons consider Sustaining Grace one of their mission fields. “We want to help people out as far as if they doubt their faith or are mad at God, we want to be there with them and help them through,” Scott says. “We also hope people know there are others out there willing to help,” Diane says. “There are wonderful communities of families out there who have Trisomy 18 children, or children of other terminal illnesses. So if people just need someone to talk to – we’d love to be a reference point for that.”

The families they help will never love their children any less than any other baby who is born, Diane says. “You love your child because you’re a parent not because the baby is perfect. I think because of these ultrasounds you get to see your baby perfect and alive and that’s really important to us. You get to have that time where you feel like you’re spending it with the child.”

“When you have a baby and lose them – you think of them. I still think of Grace pretty much every minute of every day but most of those thoughts are happy thoughts. We are so glad we had her, we are thankful for her and thoughts of her bring a lot more smiles than tears,” Diane says. Through Sustaining Grace, Scott and Diane are able to carry out Grace’s legacy. “We miss our baby girl terribly, but can say from the depths of our hearts that she was the most precious gift from God that we could possibly have received,” Scott and Diane say. “The short time we had with her was so much better than a lifetime without her.”

For more information or to donate, visit www.sustaininggrace.org.