Baby Kouba to undergo surgery for rare heart condition

"Your baby is going to need surgery."

Levi and Justene Koubas' lives changed after hearing that one sentence on June 17, less than a minute into their appointment with a maternal fetal medicine doctor. Two days earlier they had been told that their son Kipp, with whom Justene was six months pregnant at the time, had something wrong with his heart.

Their baby was believed to have a ventricular septal defect (VSD), or hole in the heart. He was also diagnosed with Tetralogy of Fallot, a rare condition caused by a combination of four congenital heart defects. The couple was told, "You will need to start seeing a cardiologist now." The doctor also said that it was possible that Kipp may have Down's or Digeorge syndrome.

After two visits with a pediatric cardiologist and an echocardiogram, the Koubas learned that in addition to Tetralogy of Fallot, their baby had a right aortic arch, a condition that required surgery as early as 2 months old.

"We were in total shock and shed many tears," Justene recalls. However, after reassurance from their doctor that they could still have a beautiful baby, they underwent genetic testing. A week later they learned that their baby did not have Digeorge syndrome, a bit of good news amidst a difficult diagnosis.

"After the initial tests and appointments, we tried to focus on enjoying the rest of our summer. There were a lot of breakdowns, a lot of asking God 'why?' but slowly, we began to accept that our baby would need open-heart surgery," Justene says.

On August 5, when Justene was 36 weeks pregnant, the family left on a trip to Grand Marais, Minn., to surprise Justene's sister Jacee at an engagement party planned by her fiance, Elijah. The Koubas and their two children, Kash and Krosbi, traveled with Justene's parents, Jeff and Becky Engels of New Rockford. While on their way, they spent the night at a hotel in Bemidji, Minn., where Justene's water broke under stress when her daughter's arm got caught in an elevator door. However, Justene wasn't fully aware of her condition. She recalls feeling "off" the next day and experiencing what she thought were false labor pains.

On August 7, after another day of traveling to Grand Marais and an overnight stay there, Justene woke up with the realization that perhaps her water had broken.

"We decided to play it safe and headed to the ER in Grand Marais; it was a small hospital but we had a wonderful doctor who confirmed my water HAD indeed broke!" Justene recalls. She instantly had concerns, including infection, having a preemie with a heart condition, and where to go to deliver.

Justene rode in an ambulance to St. Mary's Hospital in Duluth, approximately two hours away. The specialists on staff there determined that the best course of action was to deliver the baby via c-section. NICU staff were present in the delivery room, and transportation was ready just in case baby Kipp needed emergency surgery (in Minneapolis).

"The delivery went as well as possible; I was really sad/scared about having a C-section but it ended up being what was best for Kipp!" Justene exclaimed. "He came out screaming at 7:01 p.m."

The next two days were a blur for the Kouba family. Kipp's blood sugar dipped, and Levi and Justene were told that they would need to supplement Justene's breast milk with donated breast milk until she could produce enough. Meanwhile, his blood sugar was tested every two hours.

Kipp and Justene were released on August 10, after three days in the hospital. Since Justene's parents and older children were traveling back home from Grand Marais that same day, they all went together.

While Kipp is now home, the journey is far from over. He has weekly echocardiograms in Fargo from now until he is strong enough to undergo surgery at University of Minnesota, likely sometime between 2 and 4 months old. His heart will be monitored closely, and his team of surgeons will decide when it's time. They expect that Kipp will spend 10 days in the hospital, undergoing open-heart surgery to patch his large VSD, thinning the right ventricle wall, cleaning up the extra tissue around his pulmonary valve and possibly widening his pulmonary valve. Weekly echocardiograms will follow in Fargo even after surgery.

"We pray that his case will remain '"mild" and that he will only need one open-heart surgery," Justene says. "Until then it's a strict feeding schedule to help our little warrior gain weight."

A benefit fund has been set up at Community Credit Union. Drop off donations at the New Rockford branch or mail them to Community Credit Union, c/o Kipp Kouba Fund, 20 1st St S, New Rockford, N.D. 58356.