Baby Brooks fights — Parents pour their love into stricken child

Everybody thinks their kid is special, but few can say that their kid is rare — one in 20,000, to be exact — and a young mother from Newcastle is leaning into her family and faith as she and her husband care for their first-born child stricken with a rare, life-threatening skin condition.

Olivia (McVay) Venema, a Newcastle-raised 2022 Newcastle High School graduate, gave birth to her first baby boy on Feb. 22 at 1:39 p.m. Baby Brooks was born at 31 weeks and four days, eight weeks before his due date. He weighed just 2 pounds, 12.8 ounces.

Brooks was born via emergency caesarean section due to pregnancy complications from preeclampsia. Olivia had been observed at a hospital in Bismarck, North Dakota, for the three weeks leading up to the birth of her son.

After Brooks was born, however, Olivia and her husband, Dante Venema, were only able to spend one day with their son before he was transferred to M Health Fairview University of Minnesota Medical Center.

It was determined that baby Brooks suffers from epidermolysis bullosa simplex, or EBS. The doctors in Bismark told the Venema’s that the Minnesota hospital their baby was transferred to has a history of dealing with this condition and the proper equipment to care for Brooks.

The hospital first noticed signs of EBS in Brooks immediately after birth. He was rushed to the neonatal intensive care unit due to seemingly very thin skin on his limbs.

There is currently no cure for EBS — a rare, genetic condition that causes the skin to easily blister and become fragile. Children born with the condition have skin that reacts severely to even the slightest touch.

“If a person with EBS brushes up against a wall or even hugs someone, they may break out in painful blisters,” Olivia said the doctors told her.

After Brooks was flown to the hospital in Minnesota, Olivia had to stay at the hospital in Bismarck for a few more days while her own complications were monitored. She was surrounded by family, including her husband, dad and sister.

Her dad, Bryan McVay, traveled to Bismarck with his youngest daughter, Gabby McVay. They spent four days with Olivia at the hospital and stayed until she was released.

“It has been really tough on me as a father watching her and the baby suffer,” Brian said. “It is that feeling of being a parent and being there because you want to do something, but you just can’t.”

He said he has done as much as he can to support the family – trying to be strong and sending money to the couple. McVay talks to his daughter every day, whether calling or just texting. The whole family holds group virtual chats once a week to check in.

Olivia was eventually released from the hospital, and she and Dante have been staying with Brooks over the past several weeks.

“Every day he gets better is another day closer to us bringing him home,” Dante said.

They learn each day from his doctors how to properly care for Brooks after he is eventually released.

The couple has been practicing lancing their son’s blisters and bandaging his body to avoid friction.

“Every day we get the opportunity to help,” Olivia said. “They understand if it is too much for us, though.”

She too said that she is most excited to get started actually taking care of her baby once they go home. The couple wants to get the chance to be an actual family.

“It feels weird because I don’t get to do anything,” she said. “The only thing I get to do is talk to him and hold him.”

Olivia said she always knew she wanted to be a mom, and that is why after marrying her husband she knew she wanted to start a family as soon as possible.

“I was most excited about being a young mom,” she said. “It was one of the most exciting things I had ever gone through.”

“Out of all my girls, she was the most destined to be a mother,” Brian said.

However, hers and her baby’s complications have held her back from experiencing all the joys she looked forward to. Like any mom, she was so excited to have a baby shower and shoot maternity pictures, but she never got to experience any of that. Now, she and her husband are taking on challenges no parent ever anticipates facing. Olivia shared how difficult it has been for them to watch their baby be in so much pain every day.

“Nothing could have ever prepared us for this,” she said.

“The strength he has to tolerate everything he is going through makes us proud,” Dante said.

They also draw strength from their families, who do their best to support them by coming to visit whenever they can.

“They both live far away, but they make an effort,” Olivia said.

The couple also dove headlong into their faith during this tough time. Olivia said that the experience has shown them that everything does happen for a reason, and expressed the belief that God would not give them anything that they could not handle.

“He does not make mistakes,” she professed.

They also have found quite a bit of strength during their visits to the Ronald McDonald House. RMHC is an organization that provides a place for families to stay while they have a child receiving care in a nearby hospital.

“It is helpful to see that other families are going through crazy stuff, too,” Olivia said.

According to Olivia and Dante, Brooks requires dressing changes daily and his entire body must be covered in petroleum jelly.

“The only thing not bandaged is his head,” she said.

Before the new parents can return home with their child, they and their baby must hit a few checkpoints. Brooks needs to be showing the doctors
the right signs that indicate that he can live without machines. As for Olivia and Dante, the doctors want to ensure that they know how to do everything to care for Brooks properly.

The couple has done their best to stay positive despite the severity of their situation, and they focus on the “little wins” to remain uplifted.

“We do our best to provide for him, and he is doing his best to fight for us,” Olivia said.

While the situation is undeniably difficult and the journey has been challenging, it has also been a source of strength and faith. The new family has been doing their best to manage, and inspiring the people who love them with the example of poise and grace they’ve displayed.

“She has put her life on hold and made family her No. 1 priority,” Brian said of his daughter’s experience.