Diagnosed with micro-cephaly, 3-year-old Jack Lyman lights up when he hears an Elmo song. (photo courtesy Katie Lyman / September 6, 2012)

Sadly, Jack died on Sept. 6, just after this story was originally published.

For the first time since her son was born nearly four years ago, Katie Lyman is doing what she's always wanted to do: be a mom.

Since he was born on Oct. 16, 2008, Jack Lyman has been in and out of the hospital, suffered through surgeries and hasn't been able to see his parents.

Jack was diagnosed with micro-cephaly, something so rare doctors have no idea what causes it, Katie Lyman said. His brain hasn't developed the way it should.


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"When he was born we were told if he makes it a year we should consider ourselves lucky," she said. Doctors weren't sure he'd make it two weeks, the fact that he's almost 4 I think is a blessing."

Jack has bucked the odds and while it's been difficult for Katie and her husband, Will, she wouldn't trade it for anything.

Now that Jack is in hospice, Katie is spending all day, every day with him, doing the things she's always wanted to and leaving his medical care to others.

"It really is nice to just be his mom. It's a blessing, just what I wanted to do this whole time and wasn't able to do - coming down, loving on him, snuggling with him and just being his mom," Katie, a 1995 Bel Air High graduate, said. "It's a relief that way, that I'm not in charge of all his daily care. You can only do it for so long."

Jack is living at Dr. Bob's Place on North Eutaw Street in Baltimore, doctorbobsplace.org, where Lyman drives just about every day to be with her son. She leaves their Jarrettsville home between 8:30 and 9 a.m. and drives the hour downtown. Will leaves work and gets there between 5:30 and 6 p.m., they stay until 6:30 or 7 then go home by 8.

"And we do it again the next day," she said. "They're late nights and it's tiring, but what else am I going to do?"

Developmentally Jack is 4 to 5 months old, which means a lot of cuddling with his mom.

"I feel truly blessed he was in our lives this long. He's just the best little boy in the world, he makes your heart swell. You can't look at him and not smile," Lyman said. "He so wants to be held and cuddled and loved all the time. It's so precious to us, because if he were a regular 3-year-old boy I'd have to chase him down to get a hug. In his mind he wants that all the time, so I sit in a chair and rock him, and I'm more than happy to do it."

Jack can't see, he's never been able to, but he loves music of any kind, but especially kids music. And he loves Elmo.

"He really responds to music and sound and he just lights up at Elmo," Katie said. "He is the sweetest boy there ever was. He's so pure-hearted. When he's feeling well, he's laughing, clapping, smiling, playing. Not a whimper, not a cry, nothing. Unless there's a reason, pain of some sort, he doesn't cry. He's a very happy boy."

At this point, Katie and Will are only concerned that Jack is comfortable.

"Him in pain is not acceptable. You don't know what's wrong, you don't know how to fix him, the least you can do is keep him comfortable," Katie said.

Complicated pregnancy

Jack was born the day before Katie and Will's first wedding anniversary.

Katie carried him full-term and was inducted at 39 1/2 weeks. They knew from early in Katie's pregnancy that Jack could face problems, but they wouldn't know to what extent until he was born.

At Katie's first sonogram, doctors saw an issue with the baby's heart, and they were warned of possible heart defects. They went to see a prenatal cardiologist at Johns Hopkins.

"I wasn't that far along, and even with the defects, we were told it was something that could be repaired after he was born," Katie said. "It was bad news, but we were not terribly worried."

As her pregnancy progressed, doctors started to see more and more things that were wrong. Katie was measuring small for where she was in her pregnancy. When she was further along and they could start measuring Jack, his head circumference was much smaller than it should have been.

At nearly seven months pregnant, Katie then went to a high risk obstetrician at Johns Hopkins and had sonogram after sonogram after sonogram.

"They could see his head wasn't growing the way is should be. His body seemed stunted too," Katie said.

It was rare to see all those things in one fetus, she said doctors told her, so they did an amniocentesis to check for chromosomal deficiencies. Until then, they'd only been checking for things they know about – Down's syndrome, cystic fibrosis.

"He didn't have those things. According to the [amnio] results, there shouldn't have been anything wrong," she said.

The Lymans then met with a genetic counselor, who outlined possibilities once Jack was born. The best prognosis was that he could have learning disabilities and he'd be in a slower place in class; the worse case was that he could be born and not make it out of the NICU.

Doctors asked Katie and Will if, at seven months, they wanted to terminate the pregnancy.

"They were so vague. Why would I terminate the pregnancy of a child that would only have learning disabilities?" Katie asked. "As far as Will and I were concerned, the room was ready and he was already Jack to us. There was no question we were going to have him."

Katie was inducted and Jack's delivery went very smoothly. He went immediately to the NICU, where he stayed for 10 days, and in that time, Katie said, "probably every pediatric specialist at Hopkins came in to see him."

"They kept saying it very unusual, very interesting, we've never seen this before," Katie said, "so not what you want to hear."

An MRI of Jack's brain in the NICU revealed that his brain just stopped growing. While most brains have lots of crinkles on them, Jack's is more smooth, and it wasn't going to develop the way it should. And since the brain controls everything, it couldn't tell Jack what to do and what not to do.

Life with Jack

Katie and Will were first-time parents. Taking care of a baby was one thing, taking care of a baby with problems added a whole different aspect to it.

"We were just trying to muddle through and trying to figure out what they heck we're going to do," she said.

Jack ate from a bottle and did regular baby things for a while, but around 2 to 3 months old, he stopped taking the bottle. He'd eat a couple ounces then stop, and he stopped gaining weight. At 4 months, he got a feeding tube.

He progressed OK for a while, doing normal baby things, but as he started to get older, it became more and more obvious, he was going to just stay a baby," Katie said. "His body kept getting bigger, but inside he's still a baby. The older he got, the more he wasn't doing."

Jack started getting services from Infants and Toddlers of Harford County at 7 months, going through physical and occupational therapy, which was great for Jack as well as Katie because therapists were able to put her in touch with moms of other special needs kids.

He's also been to the Kennedy Krieger Institute to therapy.

"They're awesome down there," Katie said. "They know these kids so well, they taught me to many things. They're great at trying to help him develop what he can, to help him be as happy as he can possibly be."

'Out of nowhere'

Katie and Will wanted to keep Jack as comfortable as they could, keep him "as Jack as he could be," and had just started the process to enroll him in pre-kindergarten at John Archer, which would begin in October.

"Then out of nowhere, in June, he started having issues with his heart," Katie said.

While most people's oxygen levels are at 100 percent, Jack's had always been at 75 to 80 percent, and he learned to live that way. But it was like someone flipped a switch, Katie said, and Jack gained a ton of weight and he was struggling for a breath. During a trip to Hopkins' emergency room, Jack's heart rate was 250 – it's supposed to be around 90. The racing heart caused Jack to retain fluid, which looked like weight gain.

After a week in the intensive care unit, Jack went home, but within 48 hours the same he was having the same problems again.

Katie and Will knew the heart problems would eventually be an issue, "no one can live forever with these defects," she said.

"The doctors told us he's in heart failure. It has stretched to the point where he can't take anymore. It's done it's job as long as it can possibly do, and it's starting to give out," she said.

There is a surgery to fix it, and doctors told Katie that if Jack didn't have problems besides his heart, they would have already done it. There was only a 50 percent chance Jack would make it through the surgery, and it wouldn't improve his quality of live because of his developmental problems.

"Will and I decided not to do it. It wasn't going to do anything for him, affect the outcome. Why put him through that, more pain, more surgery. He's been through so much, I can't do it do him," Katie said, especially if they could be right back in the same place six months later and his heart began failing again.

Hospice care

With his heart failing, and Katie and Will choosing not to do the surgery, their options were limited. He could no longer stay at the hospital, which couldn't do anything to treat him, and his care was too much for Katie and Will to handle. The doctors told the Lymans about Dr. Bob's Place, one of the only licensed pediatric hospice centers in the country, and "we're extremely lucky to have it here.

It was a hard decision, but Katie said it was the best one for Jack, and Dr. Bob's Place, drbobsplace.org, has been "just right for him," she said. Everyone there is strictly about Jack and all about his comfort. And it let's Katie be "just a mom" to her son.

Jack is starting to get weaker, he's not as rosy cheeked as he usually is. He sleeps a lot because he's tired. He's not hooked up to a bunch of machines other than oxygen, he's in a nice bed, in his own clothes, which makes it "more comfortable for all of us."

Like Jack, Katie has good days and bad days, and on the bad days, it all hits her.

"Since he's been at hospice, it's become more real. We realize he's deteriorating, it's a daily realization now," Katie said. "We just love Jack to pieces. The family is sad. We're all pulling together, hugging each other, helping each other. We knew this time would come, we were just hoping we'd have more time before it did."

Katie has moments when she can't comprehend what's happening and she cries all day, but other times, when she's with him, "he's in my lap, I'm cuddling him and I want to stay happy. I don't want him to feel the sadness and the stress. I try to be happy when I'm here. But there are plenty of times I drive home in tears."

Bills racking up

Will works at KCI Technologies in Sparks; when they got pregnant they planned for Katie to stay home and take care of Jack and any other children they might have. They have good benefits, but the bills are coming in fast. Between January and July, Jack had nine hospital stays.

"Even if we only have to pay 20 percent, that's still a lot," she said. "We couldn't get one bill paid off before another would come in. We couldn't get ahead. That was rough, the bills were backing up."

Once Jack got into hospice and they talked to social worker about funeral expenses and how much that cost, "we thought, what are we going to do? Who has $5,000 at the drop of a hat? I know we don't."

Will's mom started a fundraising site for the Lymans. The goal is to raise $5,000 by Oct. 16; to date, $2,635 has been donated.

"People I don't even know have donated money. I'm just blown away by the generosity of people. It's overwhelming... it's so awesome people care enough to do that."

Anyone who is interested in helping Katie, Will and Jack can go to http://www.youcaring.com. There, type in Jack's last name and you'll see his picture and his story.

Katie and Will have talked about having more children, but it hasn't been possible given Jack's medical problems. It hasn't been ruled out, but they may take some times for themselves first.

"We were married exactly one year when Jack was born. Our whole first year was this crazy pregnancy then all the hospital visits," Katie said. "Maybe that time is now, for us to be together as a couple."

For now, Katie and Will are just enjoying the time they have with Jack, holding him, hugging him and thanking God for the time they've had.

"I kind of hope that when people hear about Jack, maybe they hug their kids a little tighter. If a good thing comes out of this, I hope people think how lucky they are," Katie said. "I was leading a blessed life and didn't realize it until Jack came along. Now I stop and thank God for the little things so much more."