December 07, 2011 - Ortonville- Last Christmas, Heather Wills received the most devastating news of her life— it was very likely that the baby she was carrying inside her was going to die.
From left, Olivia, Jason, Heather, Addison and Noah Wills. Photo by Patrick McAbee. (click for larger version)
Just two days before Christmas, doctors at the University of Michigan Mott Children's Hospital told Heather and Jason Wills that their unborn child had critical aortic stenosis— a heart defect in which essentially half of their baby's heart was not functioning. The chances of survival were very slim. Doctors sent Heather, 36 weeks pregnant, home. She spent that night crying through her church's Christmas Eve service.
"I spent the whole Christmas asking God, 'What the hell? Why are you doing this?'" recalled Heather. "My little girls were opening their gifts and I could feel my baby moving around inside me and I just thought, 'I'm going to give birth to this kid who isn't going to make it.' It was hard to take in the miracle of Christmas and what it was supposed to be all about."
This Christmas, the Wills will celebrate the miracle of Christmas anew— not only for the birth of Christ, but for the miracle of their own son's life. Noah Wills, who was not expected to survive, is a happy, thriving baby after a year that included two open heart surgeries, numerous procedures, lengthy hospital stays and more than a few harrowing moments.
Heather and Jason Wills never saw the upheaval to their lives coming. Their daughters, Olivia, now 5, and Addison, 2, are healthy children and Heather's pregnancies had been uneventful. In fact, she was planning a homebirth for her third child when at a check-up late in the pregnancy, her midwife said her blood pressure was high and she needed to be checked by an obstetrician. After an ultrasound, she was sent to U-M for the fateful diagnosis and the rest of December and early January passed in a haze of grief.
On Jan. 14, Noah was born, and it was discovered that his heart issues were even worse than doctors had expected. His heart condition most closely resembles that of hypoplastic left heart syndrome, in which parts of the heart are incompletely developed. The day of his birth, the 8 pound, 1ounce baby underwent his very first procedure to open an aortic valve. He was also given medications to keep vessels open that normally close once an infant is born, however, once doctors had opened the aorta, they took him off the medications to see if his heart would function without the other vessels. They quickly learned it would not.
"He started to crash and coded— his heart just stopped, it was the most frightening experience of my life," said Heather. "Everything just quit. I collapsed on the floor."
Doctors were able to restart Noah's heart and stabilize him. He was put back on the medications and at 10-days-old had his first open heart surgery. He was in the hospital for five weeks, during which Heather commuted every day to Ann Arbor, getting up at 4 a.m. in order to get to U-M in time for 7 a.m. doctors' rounds. She broke down every day during those five weeks.
Noah was allowed to come home after the five weeks and was weaned off the feeding tube. Heather was able to nurse him exclusively, which she said is almost unheard of in babies with heart ailments. In March, however, he had another heart procedure, after which he stopped gaining weight. He was once again hospitalized, for a week this time, and when he returned home he was on a feeding tube again. On June 2, he had his second open heart surgery to restructure his aortic arch and build different heart chambers and this surgery did not go well. Noah's left diaphragm was paralyzed during the surgery and his left lung collapsed.
"He had two or three days when he was blue, blue, blue," said Heather. "He started throwing up blood. He was in the hospital for five weeks after with complications. I begged them to let me take him home."
Noah came home with a feeding tube and feeding pump, 12 different medications and a nebulizer for breathing treatments three times a day. Now he takes a bottle and drinks up to 8 ounces of breast milk donated by nursing mothers Heather knows, because he can't handle formula and the stress dried up Heather's milk supply.
The Wills are thankful for this support and all the other forms of support they have received— including monetary donations, gas cards for the daily trips they were making to the hospital in Ann Arbor, babysitters for their girls, meals, and prayers.
"It's been the biggest roller coaster of our lives," said Jason. "It was such a whirlwind at times. We've had stress in our past, but nothing comapred to what we had to deal with this year.... We've had so many people supporting us in so many ways. It's very heartwarming. This Christmas is the complete opposite end of the spectrum from last, so happy and joyful. He is so happy all the time, laughs all the time. He has the best disposition. Even with all he has been through, it has made him that much stronger, and us, too."
Noah has now started speech pathology and physical therapy out of Hurley Hospital in Flint. He is down to six medications and is behind on his gross motor development, but is catching up. He has no restrictions currently, but competitive sports won't be in his future. Noah loves music and bops his head along to everything. A heart transplant is expected in the future.
"I can't imagine my life without him," said Heather. "He smiles all the time. Here's a kid, 11-months-old, and he has stared death in the face several times. They didn't think he would make it and here he is."
Heather cites two passages from Scripture that she read repeatedly after Noah's birth and which comforted her.
The first is from Jeremiah 29:11, "'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'" The second, found during her Bible study, came from Luke 1:14, "He will be a joy and delight to you and many will rejoice because of his birth."
Heather points out that the chapter and verse matches the date of Noah's birth.
"After I read that, I said, 'OK, alright, I'll quit wallowing in my sorrow," she said. "He has been such a joy."
Last Saturday, Noah visited Santa Claus during Christmas in the Village in Ortonville. The cherubic baby sat and stared wide-eyed at the big man in the red suit, not yet able to talk and tell Santa what he would like for Christmas.
Heather doesn't know what she will get her son for Christmas, but she has already received her gift.
"What do you buy a miracle baby for Christmas?" she asks. "He has already gotten the greatest gift— life. As for me, I have what I need—my husband whom I love, my children whom I adore and I have this miracle and a new appreciation for life."
Susan covers Brandon Township and Ortonville