The Baby Alex Foundation
Funding Cutting Edge Pediatric Brain Injury Research and Pediatric Brain Injury Patient and Family Support.

About Us



Founded in 2008, The Baby Alex Foundation was established to fill the gaps in pediatric brain injury research. Since gifting our first grant in 2009 to researchers at Dartmouth-Hitchcock Medical Center, the Foundation has given over $250,000 in seed grants to some of the leading research institutions in the world, to include Children's Hospital Boston/Harvard Medical School, Massachusetts General and UC Davis Medical School.

Directors and Staff

Staff

Nicole Schmidt
Co-Founder and President

Erik Skulte
Co-Founder and Vice President

Molly McHugh
Director of Marketing



Board of Directors


President and Treasurer
Nicole Schmidt

Vice President and Secretary
Erik Skulte
Senior Vice President
ESec Lending

Karen Nicolini
Realtor
Coldwell Banker Real Estate

Molly McHugh
Communications Manager
Grassroots Soccer

William Scally
PriceWaterhouseCoopers

Christopher Schmidt
Design Technology Instructor
Thetford Academy

Lisa Yaffe
Property Evaluator
The City of Philadelphia



Grant Review Committee

Dr. Joseph Volpe
Neurologist-in-Chief Emeritus
Children's Hospital Boston

Francis DiMario, MD
Pediatric Neurologist
Connecticut Children's Medical Center

Lenny Eisenfeld, MD
Neonatologist
Connecticut Children's Medical Center

Jean Bender, RN
NICU Nurse Practitioner
Connecticut Children's Medical Center

Kathleen Bullis, RN
NICU Nurse
Connecticut Children's Medical Center

Nicole Schmidt
CEO and President
The Baby Alex Foundation

Erik Skulte
Vice President
The Baby Alex Foundation



Medical Advisory Committee

Dr. Joseph Volpe
Neurologist-in-Chief Emeritus
Children's Hospital Boston

Francis DiMario, MD
Pediatric Neurologist
Connecticut Children's Medical Center

Lenny Eisenfeld, MD
Neonatologist
Connecticut Children's Medical Center

Nicole Schmidt
CEO and President
The Baby Alex Foundation

Erik Skulte
Vice President
The Baby Alex Foundation



Read Here to Begin Alex's Story


A Difficult Start:


Alexander Skulte was born at 26 weeks gestation. Weighing just 1 pound 15 ounces, Alex had a tough start. We, his parents, with no expectation of a premature birth and no experience with preemies in our family, were ignorant of the highs and lows our lives were to face in the coming months. Over the 5 1/2 months Alex spent in the NICU, there was rarely an uneventful day. Within days of Alex's life, he suffered a grade III and grade IV Interventricular Hemorrhage (IVH or bleeding in the brain) as a result of his low birth weight. His brain began to swell, causing the need to have a temporary shunt placed from which spinal fluid could be drained periodically. The bleeding destroyed brain tissue, leaving in its place a black hole of spinal fluid. During the first three months of life, no one was able to give us an idea of the area of his body the brain damage would affect, whether he would walk, eat, talk, read.


Click the button to view excerpts from the Emmy award-winning documentary, "My First Breadth," featuring Alex's family in the early days of intensive care.


After three months at Connecticut Children's, we transferred Alex to Children's Boston for a second opinion on management of his hydrocephalus (brain swelling). After just over two weeks in Boston, he was released from the hospital. We were elated. Within days, he had to be readmitted because he had contracted bacterial Meningitis in the hospital. He had two more brain surgeries and was on IV antibiotics for weeks. We faced a terrifying three weeks back in the hospital where we watched Alex suffer like we had never seen or imagined.


When Alex came home after this second hospitalization, we continued to administer the antibiotics at home, every few hours around the clock. Alex was making progress, nursing well and finally putting on weight. Unfortunately, days after his return home, he was readmitted for a third time for another brain hemorrhage. The neurosurgeon tapped Alex's head through his fontanel, which hit a blood vessel that bled internally, and he lost nearly half the total volume of his body's blood into his head. This last event was possibly the scariest for all for us, as we watched his vital signs hit bottoms we had never seen before, both before and after the surgery that evacuated the blood and stopped the bleeding. He suffered seizures and had to remain on seizure medication for three months. During all of this time, we never left Alex's side, doing shifts by his bedside and catching a few hours of sleep in a hospital bedroom.

Alex finally came home, but with a permanent shunt that was inserted to drain spinal fluid from his head, which because of all the trauma he suffered, could not drain the spinal fluid properly. This hardware bulges from the back of his head, a daily reminder of his tough start.


We are writing a book about our experiences, with the intention of providing information to parents, friends and family members of preemies, expectant parents (especially those at high risk for premature birth) and medical staff. We hope the book will provide valuable information about life in the NICU and the pain parents face as they watch their baby struggle to survive, express the importance of family-centered care in the hospital, offer support to families making medical decisions about their child, and finally, to provide a message of hope.


Now, we turn attention to the present, and offer Alex's page as a means to convey Alex's incredible progress. His is a story of hope and inspiration to anyone facing life with a child engaged in an early struggle.


The Second Chapter: The First Year


When Alex came home from the hospital, it was February, the middle of the flu season. With the exception of our hospital and pediatric checkups, Alex was confined to home. For two months, we allowed only a few family members to visit him, and kept him from contact with any other children. His health was poor, his immune system weak, and we could not afford another setback. By May, we began introducing him to our healthy family members and friends. Not until late summer, when he had put on a few pounds and built up his immune system, did we allow him to play with other children.


From the time he left the hospital, Alex has been receiving therapy from Birth to Three, the state run program that provides therapy to premature babies. Alex is far behind developmentally, but is making progress. At 14 months old, he still does not crawl, although he is trying. He can support his weight on his feet, but is not walking or pulling to stand. His only noticeable disability is in his left arm and hand, the area ultimately affected by the brain damage. He receives daily therapy to improve the strength and coordination on his left side.


Cognitively, Alex is making great progress. He started babbling at 6 months, and at 14 months, says several words, follows many verbal directions, knows a few parts of his body, and the names of his toys. He stopped eating baby food months ago, and eats only what his parents eat, chopped up in tiny pieces because he has only two tiny teeth just beginning to show.

As parents of a preemie, we had no idea what to expect when it came to Alex's development. We are proud, thankful and very fortunate that Alex is developing as well as he is.


Sixteen Months and Making Progress


Alex is now sixteen months. He crawls all over the house, pulling with his arms and pushing with his feet. He has not mastered getting his knees under him, but that doesn't seem to hinder movement. He is standing and taking steps with our help to keep him balanced. Crawling seems to have strengthened his shoulder, arm and hand as he is forced to open that hand and use the whole arm to move. Swimming lessons have also helped him become more fluid in his movement. He learned to crab walk his way along the side of the pool, hold his breath while dunking under water, and reaching out for toys with both hands. Water therapy is not only effective, it is fun, especially in the dead of winter when outside games are limited. Alex loves music and has begun to dance whenever he hears a tune he likes. He is also finally using his sippy cup by himself and eating his cereal with a spoon. He greatly favors his healthy hand, but we constantly ask him, "where's lefty?" or tell him to "let lefty help" and he understands we want him to use his left hand.


Cognitively, Alex has begun to hit his stride. He can say the first half of at least 20 words, and loves to repeat words that we say to him. He has begun to make animal sounds appropriate for the animals in his toy collection. He shakes his head when he means "no". He asks "that?" to mean "what's that called?" and is curious about the names for everything. When asked about body parts, he will point to his head, ears, tongue, teeth, toes and feet. He loves the Head, Shoulders Knees and Toes song, which he has listened to so often that we find ourselves singing it in our sleep.


Alex has a new sister, named Isabella. She was also born prematurely, at 35 weeks. She stayed in the hospital for 10 days while she gained weight and strength and proved that she could feed entirely by mouth. What a difference 9 weeks can make in the development of a child. Alex doesn't quite know what to make of her, but he knows she is his "ba" (baby) and likely here to stay.


Alex Learns to Walk


Alex hit twenty months last week. These last four months have proven extremely important developmentally, and we are amazed at his abilities. On May 15th, Alex used his push walker, an ugly brightly colored plastic push toy on wheels, for the first time. We have been encouraging him to try it for months, but he has been scared of it and would just cry and drop down on the floor every time we enticed him to give it a shot. But, then one day, he found the courage to push it by himself, and quickly found that he could do it. As soon as he could get his little legs going, he started yelling "fast, fast!" and took off around the room. It has become his favorite toy as he practices to walk every minute he can. He uses it to balance himself so that he can stand without anyone's help for several second at a time. "I standing," he tells us, hoping everyone will watch. Of course, we all do. His left hand continues to be an obstacle, but he has begun to use it more, to reach for objects and even feed himself occasionally with lefty. We are considering casting his right arm for a few weeks once he is walking, so that his left will be forced to work harder. We are learning, it is all about building those synapses. Practice, practice, practice.


Alex's language ability is pretty extraordinary. For a child whose glucose level was a 2 for days at a time while he hand meningitis, who likely suffered oxygen deprivation to the brain during his brain bleed, and has struggled with nutritional issues his whole short life, his cognitive development is amazing. He can say about 100 words, repeats sentences, makes his own sentences ("I standing; I walking; I yogurt, I throw rocks, ect"), can count into the thirties, counts to ten in Japanese (thanks to our Japanese au pair), knows his alphabet in English and sign language, can sign about 30 words, can recognize the sign for about 50 words, can sing along to his favorite songs, knows all his animals and their sounds, knows his colors (red, green, blue, yellow, purple, orange, black, white and silver) in English and sign, knows the opposites of ten words (we say "up" and he says "down"; we say "full" and he says "empty", etc) and he can even spell his name. He loves music and wants to sing and conduct and dance all the time. We wonder if he is accessing some part of his brain he would not have used had he not had the brain damage. We don't know.


Alex gets overwhelmed with a large amount of sensory input, especially when he is tired. We try not to have the TV on, except to view his signing videos. We play music softly, and often shut it off completely and sing to him softly before bed. In the late afternoon, when he gets very tired, we give him his bath, which helps to soothe him and keep him from getting too cranky for the last few hours before bed. Sleep is extremely important for him. He sleeps about 11 hours a night with a 2 hour nap during the day. When he gets less than this, he is cranky and excited in the afternoon. We have also found that he is extremely sensitive to sugar. We try to keep his sugar intake low. He loves ice cream, but we subsitute it with yogurt (which we freeze). We dilute his juices, and do not allow him any sweets. On the rare occasion he has had bites of donut, or cookies or other sweet things, he gets hyper and out of control. All of these issues may be related to being a 20 month old. Since Alex is our first child, we often have to consult our books, pediatrician, and friends to ask if his behavior is normal for a child his age. Often, we sit there shaking our heads. Parenting is not an easy task.


For any parent of a preemie, or a child with any special needs, our advice is to believe the obstacles can be overcome. Research, trial and error, and your natural instincts will help you design a lifestyle that enables your child to reach beyond any expectations you might have had for him or her. The day Alex walked by himself behind his push walker, Erik and I were in tears. We will never forget the day we were told that Alex might never walk. To see him using his legs has been our miracle.


Twenty-Two Months: Alex is Walking!


Alex finally took his first steps on his own on Memorial Day. Since then he has been working like crazy to gain control of his legs. His balance is terrible, and as a result, he pronates both feet to balance, which makes walking awkward. We bought him high top shoes to help support his ankles, but will likely get him braces of some sort when he goes to his first walking therapy appointment this month at CCMC. Despite his difficulty with walking, he is undeterred, he just totters along as fast as he can go, picking himself up every time he falls, and refusing to take our hands, even when we want to help him down a step or over an obstacle. He is determined and that determination will likely get him everywhere in life.


His language ability continues to grow and amaze us. He now counts into the twenties in Japanese, says everything in complete sentences, follows complicated tasks ("Get the ball and bring it to your sister and gently place it into her hand, then come give mommy a big hug."), and can understand spelling in English and in sign language. When I sign "dog" to him, he follows the signs, whispering each letter to himself, then announces "dog", proud of his accomplishment and eager for the next challenge. He can spell, Alex, stop, and Daddy without any help. We continue to progress through the signing time video series, which he loves. He is learning all kinds of new words (octopus, lizard, hippopautomus) and signs. And as they advertise on the series, his temper quickly calms when I tell him to use his words or signs to tell mommy what he wants, rather than just scream and throw a tantrum.


Tonight, Alex will run his first race. Milford Road Runners sponsors a race for kids starting at the age of 1, at a local track. We are taking Alex to run with the 1 year olds. Although I will have to hold his hand to help him along, it will be a major, major milestone in his recovering and progress.


Alex's First Race


Alex ran his first race, 60-meters, in mid July. He wears high tops to support his feet. He proudly wore his number and immediately understood that when the flag went down, he should take off running until we told him to stop. It was pretty funny when the race organizer announced, "Next up, two and under. Anyone two and under should line up." We lined up. When the flag went down, we took off, Alex's little legs going as best they could and me holding his hand to keep him from falling down. As he ran, he took in the scene and repeated, "Running, running." Of the three under two, he came in third, and got a yellow ribbon. He was so proud of himself, fully aware that he had accomplished something incredible. Of all the races I done in my life, of the hundreds and thousands of miles I have run, these 60 meters were the most important of my life. Click the button to watch video of Alex's First Race.

Alex Turns Two!


Alex turned two at the end of September. What an incredible year he has had. One year ago, he was still sitting in his Bumbo, unable to sit by himself without falling over, wearing 0-6 month clothing, saying a handful of words, with only two bottom teach and a severely disabled left hand, had yet to give us any indication if he was going to be able to walk. On his second birthday, dressed in 24 month old clothing, he sang and danced around the room, showed off how he can jump into the air off the ground, devoured ice cream cake with at least 10 teeth, spoke in full sentences about what he wanted to do that day (I want to see the red and yellow fire trucks...I want to go to Grandma's farm and see the roosters...Happy Birthday to me!) and with the help of his left hand, threw balls and climbed all over his new blow-up fire truck.


Alex is due to receive a brace for his left foot, which will force him to place more weight on his left side and walk more evenly. Although he has made great strides in his ability to walk and run, he still has balance issues that make him rely on his right side for most of the work (including his right arm). Although his brain damage did not damage the area that controls his left leg, his balance was damaged (by the brain injury, by weeks of taking Gentromycin? We don't know exactly.). As a baby, he would be sitting perfectly still watching Signing Time and suddenly lose his balance and catapult backwards, hitting his hard hard. We had a pillow behind him until he was about 18 months old. His sister, Izzy, has never done that. The few times she loses her balance, she sort of rolls backwards or sideways, but never smashes into the floor. Alex still loses his balance when he is tired, and even when standing, holding to the side of the couch or table, he will suddenly fall. We have had to remove from our house all objects with sharp corners.

Overall, he has had an incredible year. We are happy to have arrived at two.


Another Brain Surgery


In December, Alex had to have another brain surgery. The problem was that there was scar tissue blocking the flow of spinal fluid on one end of one of his ventricles. In early December, his neurosurgeon performed a procedure to make a small hole in the scar tissue to allow the fluid to flow. He also checked the shunt, which appeared to be working. The procedure lasted about 3 hours, and while the overall experience for 2 year to get through surgery and post-op recovery is exhausting (especially for the parents), he went through it well and in good spirits.


He has been using his brace for about 2 months. We can't tell, honestly, if it is making any difference. When he wears the brace, it improves his balance, stability and normalizes his walking motion. But as soon as he takes it off, he is back to using his left food like a crutch. Regardless of his disability, he manages to get around without much problem. He runs circles around our kitchen, races his sister up the stairs, scurries over the sand looking for rocks and shells to throw into the ocean, and loves to chase his daddy. It is amazing how children with disabilities manage to overcome them.


We continue to work his left hand and have developed a number of games to make him use lefty. In the tub, we use small square sponges for our games. Alex uses lefty to squeeze water out of the sponge and then throw it to the other end of the tub. He also has small whales and dolphins he picks up and throws. On the beach, lefty has to throw an occasional rock or into the ocean, and help his right hand to pick up large rocks. He has also begun to use his left hand to feed himself, both small items grasped in the hand itself, and by way of a spoon or fork. He usually lets his right hand help his left, and although it looks like cheating, it isn't. We pretend that lefty did all the work and praise him for his efforts, which makes him happy, and encourages him to try again and again. The key to these games is to make them fun and when he gets frustrated, to stop. A little is good, but a lot is often too much.


Cognitively, Alex is souring. He has been learning Japanese, and has about 50 words in his vocabulary. His Daddy speaks some Japanese, and so he is teaching him basic body parts, trucks, cars, etc. Alex knows when he is speaking Japanese, and he will tell you which language he is using: English, Japanese or sign. His sign language has also taken off. His signs used to look very similar to each other, but recently he has been signing more accurately. He has started to do a number of the letters of the alphabet, which is difficult for a 2 year old because their hands aren't yet skilled enough to hold up certain fingers and not others. We spend a lot of time throughout the day reinforcing these "lessons", and Alex welcomes the challenge. Alex surprises us every day with how much he can understand and retain.


Transitioning to the Blog


As Alex approaches his third birthday, we are transitioning his story away from the foundation website and onto our blog, which Alex and I create together. Thank you for reading his story, and if you know of anyone who has a preemie who, like Alex, has suffered brain damage, please share Alex's story and our website with them. We would welcome the chance to share their story on our website. Please contact us at nickyschmidt@gmail.com.


If you enjoy reading about Alex's everyday progress, or if you are interested in more detailed information about the therapies we do with his hand and foot, please visit our blog: www.babyalexfoundationblog.blogspot.com.