Baby born with rare condition beats odds with help of parish family

EASTPOINTE — Andrea and Tadd Hasse did something slightly unusual right before the baptism Mass of their son, Grant, on June 10, 2012.

There, among their fellow parishioners of St. Blase Parish in Sterling Heights, the parents turned on a short video about their son. The video explained that Grant, who was born Nov. 28, 2011, had come into the world with Congenital High Airway Obstruction Syndrome (CHAOS).

Due to this condition, Grant was born with a large cartilage obstruction in his throat and no vocal chords, requiring him to be on a ventilator to survive.

At the time, there were fewer than 20 known survivors in the world with this syndrome. But little Grant, who sat that Sunday in his double stroller — one seat for himself, and the other seat for his portable ventilator — was already defying the odds by thriving.

“It explained what was going on,” said Mary Dumm, pastoral associate at St. Blase, who helped arrange the presentation before Mass. “It was completely quiet in the church. You could have heard a pin drop — except for people crying.”

The pastor, Fr. Randall Phillips, asked what is always asked of the faithful at a baptism: will you support these parents in supporting this child?

“And the parish said ‘yes,’” remembered Dumm, knowing parishioners fully intended to go above and beyond to help this baby.

A miracle baby is born

Andrea Hasse said Grant’s syndrome was discovered when he was 18 weeks in utero.

“They didn’t know if I’d be able to carry him to full-term,” she said. “But if he did make it to birth I’d probably deliver quite early.” The Hasses contacted University of Michigan Health System, which responded with confidence to take on the case with its ear, nose, and throat group.

“I was going for weekly ultrasound appointments at Beaumont Hospital in Royal Oak, and every other week at University of Michigan,” Hasse said.

She went into spontaneous labor at week 27, and despite efforts to halt the birthing process, Grant intended to arrive that night. Medical professionals worked to perform an in-utero surgery, and Grant was set with a tracheotomy tube in his throat by the time he was born.

“It was done under a team of about 40 doctors,” Hasse said. “Part of that 40 was my team and part was Grant’s team. We got to know a lot of people.”

Spending the following months in surgeries, various breathing treatments and some heart surgery, Grant insisted on flourishing and setting more records for his rare condition. While most children born with CHAOS have some portion of vocal chords, Grant was born without any at all. “He is the only known survivor that had absolutely no vocal chords in that complete blockage” in his throat, explained Hasse. “Most kids either had both cords encased in the blockage, or one or two outside the blockage. They saw that he had none.”

As an answer to this discovery, the surgeons created vocal chords from the cartilage blockage they were taking out. They didn’t expect Grant to be able to necessarily utilize the chords to make any sound, however.

“We just found out on Sept. 5 that there is potential function,” Hasse said. “They found that they were vibrating — which is what you’d see in a normal patient.”

Grant’s parents have been teaching him baby sign language — he is up to 30 words, his favorites including “dog” and “caterpillar” — but they eagerly await the day that their son’s body and vocal chord muscles create his first vocalized sound.

The parish steps in

But with all of these successes, the numerous medical visits had put enormous financial strain on the Hasses.

The parish of St. Blase knew it was their time to step in and help.

Operating with the assistance of Fr. Phillips and Dumm, parishioner and committee chairwoman Susan Buffa organized a special fundraiser Sept. 6 to raise money for the family. The fundraiser was held at the Century Banquet Center in Sterling Heights and consisted of numerous raffles and a concert by local band Blackthorn.

“The benefit was more than we could have ever anticipated,” Hasse said. “It’s been overwhelming support.”

Help baby Grant Hasse Donations for the Hasse family can be made by check payable to Grant Hasse through St. Blase Parish, 12151 E. 15 Mile Road, Sterling Heights, MI. Call St. Blase Parish at (586) 268-2244 for more information.

But for parishioners such as Dumm, that’s just what a church community should be expected to do.

“We were thrilled to have the opportunity to help,” she said. “It gives people a way to live out the promise they made. All we did was open up the door that the Holy Spirit wanted us to. This is how family is; this is how the Church is supposed to be.”

The blessings that follow

Hasse explained that she and her husband have always been very Christian and Catholic, with a strong faith in God. But the experience with Grant “not only solidified everything, but also brought to the forefront on a daily basis how precious life is.”

“I feel like his happiness in and of itself is how Grant is so unique,” she said. “He truly does make everyone and everything his own, and he’s always so happy, curious and full of life.”

Though he can’t make a sound, Grant brings joy to everyone he encounters with a perpetual smile and his love of people, she said: “He has a way to captivate an entire room because of his genuine smile. He is so incredibly happy despite everything that he’s been through. He’s a very social baby.”

The Hasses ask themselves how they were so lucky “to be chosen to be Grant’s parents.”

“We named him Grant because we were granted a gift from God,” she said. “It’s a life lesson not only for us but for everyone, because the impossible truly is possible.”