In January 2000, when Leelee Smith Klein was only 26 weeks pregnant, her twins Grace and Larsen were born. They weighed 1 pound, 12 ounces, and 2 pounds.

They suffered from serious health issues and were in the hospital for many months before they could go home. Klein was very worried about them, and had many questions.

With the exception of Klein’s friend, Darien resident Patty Cunningham — who also had a baby born prematurely — she depended on the hospital nurses and doctors for support.

Reflecting back on that difficult time, Klein said she wished that she could have benefited from the services that the Tiny Miracles Foundation now provides.

Tiny Miracles Foundation

The Tiny Miracles Foundation, which was formed 15 years ago, is a Darien-based nonprofit organization that supports parents of premature babies. Premature babies are those who are born 36 weeks or earlier.

All its programs and services are provided free of charge.

Tiny Miracles works with Stamford, Norwalk, Bridgeport, St. Vincent’s, and Danbury hospitals.

Tiny Miracles has close to 30 volunteer parent mentors that rotate into the hospitals on a specific schedule, and has well over 100 volunteers involved in the organization.

Volunteers for Tiny Miracles live throughout Fairfield County. In addition, there are paid social workers on staff that work in the hospitals.

“We provide peer-mentor support, financial assistance, supplies, education, referrals and resources,” said Klein, who is president emeritus of Tiny Miracles. Cunningham is a founding board member.

Tiny Miracles supports 1,200 families throughout Fairfield County each year. For more information, visit ttmf.org or call 203-202-9714. The Tiny Miracles office is at 381 Post Road.

Tiny Miracles is partnered with the neonatal units of six hospitals, providing psycho-social support services to parents who have premature babies in those hospitals.

It also supports parents who have babies in Fairfield County who are transferred to another hospital, and any friend or family member with a premature baby, by referral.

The organization helps more than 100,000 people a day by the services they provide on their website, Instagram and Facebook pages, according to Klein.

Welcome bag

Any parent who has a premature baby in one of the hospitals served by the Tiny Miracles Foundation receives a welcome bag, and a home care bag when they leave the NICU.

Items inside the bag include: Special size clothing and pacifiers, special size wraps, a tiny hat, and information about Tiny Miracles.

There is also a bonding doll that the baby can sleep with. “It retains the parents’ smell,” Klein said.

The welcome bag itself is a milk storage bag that has a freezer component.

Support

All support is parent-led, so it can vary greatly from one parent to another. All parent mentors have given birth to premature babies themselves.

“They are trained to know when to approach and when to not approach,” Klein said. “It depends on the connections you make and what the parent wants.”

In addition, hospital doctors and nurses “ask us to speak to families or to sit with families in certain situations,” Klein added. Sometimes, “we go to the doctors and say we are worried about something.”

Klein visits up to 40 preemie parents a month.

According to Klein and Cunningham, top concerns of parents of premature babies are:

 Will my baby survive?

 How is the prematurity going to affect the development of my child?

 How am I going to cope with this when the baby goes home?

“We teach them how to manage their home life as best they can,” Klein said.

Peer mentoring and peer support “gives them a touch point of hope for the future because they’ve met a group of parents of premature babies,” Klein said.

The relationship between Tiny Miracles volunteers and parents doesn’t end when the preemie is a baby. It can last indefinitely.

Many times, the parents of premature babies become volunteers themselves, since they want to stay involved in the preemie community, according to Klein.

Funding, financial assistance

Tiny Miracles is supported by donations, either through events such as a yearly gala and golf outing, or grants, according to Cunningham, who also had a premature baby. Her son Evan was born 11 weeks early. He was 2 pounds, 9 ounces and was in the hospital for six weeks. Now 27, he’s an economist and is working on his doctorate.

In 2019, Tiny Miracles gave $80,000 to Fairfield County families through its emergency financial assistance program.

“We make sure the baby and the parents go home as mentally healthy as possible, and the baby is in the right environment to go home to,” Klein said.

Tiny Miracles “keeps the community of preemie parents together so they support each other,” said Klein, whose twins are thriving today as students at Colgate University in Hamilton, N.Y.

“When you have a child that is impaired in some way, you want to find other parents who have been through the same experience to help you find the road map to cope with it,” she added.

Fast Facts about premature babies

(Source: March of Dimes)

 In 2018, 1 in 11 babies (9.4 percent of live births) was born preterm in Connecticut.

 Compared with single births, multiple births in Connecticut were about seven times as likely to be preterm in 2017.

 Premature birth can lead to long-term intellectual and developmental disabilities. This can cause delays in physical development, learning, communicating with others, getting along with others, and taking care of oneself. Long-term disabilities caused by premature birth include behavior problems and neurological disorders.

sfox@darientimes.com