Late on the evening of Sept. 22, 2011 Aaron and Elizabeth Jensen joyfully dialed cell phones from the hospital in Logan. They called family and friends in the Uintah Basin to announce the birth of their second child a 5 lb 14 oz baby girl. During this call, grandparents were told that although the baby was born two weeks early she was healthy and gorgeous.

“Mother and baby doing fine,” was the message loved ones heard.

An hour later the couple redialed, this time solemnly explaining that the pediatrician was fairly certain little Madeline Rose, the beautiful child with the unruly dark hair, would be diagnosed with Down Syndrome. Besides having the genetic condition that causes delays in physical and intellectual development, the newborn had a heart condition requiring surgery.

“The second call was a lot harder,” Elizabeth said. “Probably one of the hardest things I have had to do. I was the one comforting them and saying, ‘You know it’s going to be okay. She’s going to be awesome. Everything is going to be fine.’”

Elizabeth did feel that everything would be fine and that the future will hold wonderful days of joy, but she does acknowledge that there was a time of grieving.

When the couple’s son, James, was born nearly two years ago, Elizabeth remembered that he was cleaned quickly and then returned to her. The scenario was different for baby Madeline.

“The nurses took a really long time looking her over, especially compared to James,” Elizabeth said.

The couple admitted that they felt overwhelmed after talking with the doctors and then getting Elizabeth to her room and the baby safely situated.

“Madie got moved to the NICU (Neonatal Intensive Care Unit),” Elizabeth said. “Nurses kept coming in and out telling us they were sorry. I got moved up to the main floor. There was probably an hour from the time we were told until we actually had a room to ourselves so that we could sit and let it sink in what was going on.”

Elizabeth, the daughter of Gawain and Addie Snow, was raised in Jensen outside of Vernal and graduated from Uintah High School in 2005. During her high school years she was a peer tutor for handicapped children. She helped with Special Olympics and because of her love for this kind of association; she chose to major in music therapy concentrating on students with special needs.

“I’ve always been really drawn to them and love and adore them,” Elizabeth said. “That’s why I got my degree with that as a focus.”

Aaron, originally from Lyman, Wyo., will graduate this May with a master’s degree in civil engineering from Utah State University. He was not as familiar, as his wife, with the special needs that his daughter will have.

As the medical staff dealt with unhealthy sugar levels and a mild infection in the newborn, the young couple dealt with the unexpected change in their own life.

Elizabeth tried to explain their emotions.

“At that point you just have to take time to grieve,” she said. “Not that you don’t love her or love everything she will be. It is not the situation you were prepared for.

“It takes a moment to realize what you are going to have... this awesome little baby who will truly be amazing and sweet and wonderful and do all these other things, but it’s not what you went in for,” she said.

Eventually the couple learned that Madeline has a heart condition called Complete Atrioventricular Canal defect. When a heart is properly divided, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body. With CAVC a large hole in the center of the hearts affects all four chambers allowing blood to mix and the chambers and valves do not properly route the blood.

On Jan. 3, Madeline was considered strong enough to undergo surgery at Primary Children’s Medical Center in Salt Lake City. Her surgeons rebuilt the center of her heart in a rather complicated surgery.

The busy mother of two is knowledgeable as she articulated the many steps involved in the heart surgery.

The surgery was considered successful, although there is still a small residual hole in the heart.

“It’s something they will have to watch,” Elizabeth said. “They don’t’ anticipate that there will be a problem.”

The surgeon told her that about 20 percent of children with this operation will have another operation in the future to mend any residual holes, however they can live a full and active lifestyle like anyone else.

Her voice resonated with pride as she described the energy of her older son and how loving he treats his sister. That pride is also evident when she told of her husband’s week of reading and educating himself about everything concerning Down Syndrome children.

Elizabeth’s voice was grateful as she explained how much her husband loves the little girl and how he has become her most loyal advocate. The mother showed determination and strength as she talked about the future. The woman’s voice only cracks with tears when she told of the support she and her husband have received from the community.

Aaron was away on a class trip during the interview, but he had specifically requested that his wife thank the many people from the Vernal area who had supported them. Obviously the prayers and help given by community and family were important to both Aaron and his wife.

“We’ve just been overwhelmed with the support,” Elizabeth said. “So many people we don’t even know.”

A tree during the November “Trees for Charity” event was donated for the family. In a separate incident Elizabeth’s sister received a $100 from a woman because the Good Samaritan wanted to help the students who were dealing with two children and all the travel and expenses involved in a surgery that required a week-long stay.

“We don’t even know these people,” Elizabeth said. “We’re just typical college students. Logan doesn’t have a great paying job market and sometimes just gas to get to an appointment is a stretch. During the surgery we were in Salt Lake for a week and a half. There were living expenses. We couldn’t have done it without this kind of help.”

Another kind of help the couple received was when a church leader came to see them. This man and his wife had a son with a severe handicap.

“My husband asked the couple if any of their other children had disabilities,” Elizabeth said. “They laughed and said, ‘All of our children have a disability.’”

The couple then continued to explain that everyone has a disability.

“All of us, no matter who you are, have our own disability that we have to overcome,” Elizabeth said. “Some disabilities are easier to identify. But we all have them. It doesn’t mean that your life can’t be full and joyful and you can’t accomplish the things you want to.”

Aaron and Elizabeth plan to help Madeline accomplish anything she wants to.

Donations to the family can be made at Zion’s Bank under “Madeline Jensen.”

Elizabeth said a portion of the funds will be donated to the national down syndrome society or directly to other families with children with downs.

To see updates on Madeline’s condition follow the blog: http://nothingdownaboutdowns.blogspot.com.