Eager to take the world by storm, Steven Matthew Weil blessed his parents, Matt & Paige, with his arrival 11 weeks early this past July. At 3 pounds, 4 ounces, Steven faced the challenges of prematurity, along with several additional health complications. Baby Steven was born with Hemifacial microsomia, incurred the most severe type of brain bleed, & developed hydrocephalus to name a few.
After 173 days in the NICU, the very special moment for Baby Steven and his family had finally arrived! Enduring countless pokes, prods, tests and assessments, Baby Steven had convinced the hospital what his parents could sense in their son from very early on that he was ready and willing to take on any and all challenges. After 6 months and 4 surgeries Baby Steven left Lurie Children's Hospital and was finally able settle in to his own crib in his own nursery at home.
While we all hope our precious children are given nothing but softball pitches to practice, Baby Steven has been thrown pitch after pitch of curveballs. Thankfully, armed with a superhero's combination of courage, perseverance & grace bestowed upon him by his parents, Baby Steven has shown an uncanny ability to hit whatever is thrown at him. His nurses, therapists and doctors at Evanston & Lurie Children's Hospitals believe in him; his family believes in him; and, more evidently every day, he believes in himself.
We would greatly appreciate your belief in him and hope you'd become a part of Team Steven and show your support through the “Believin' in Steven” Scholarship Fund. It is Team Steven’s mission to take nothing at face value. Since Day 1 of Baby Steven's birth he has defied the odds and we will help him to continue to do so. We are committed to thinking outside the box when it comes to the challenges and care for one amazing child and to finding healthcare providers who do the same. We are hopeful that during this journey we will cross paths with other teams and families with stories that resonate with our own and we could think of nothing more rewarding than to positively impact their journeys with any support they may need so that their superheroes can best conquer the world too.
The brain is a marvelously complex and consequently mysterious thing. The brain bleed Baby Steven incurred requires that he create new pathways to do everyday things. This fund has been established to support the range of special care equipment and treatment interventions that will provide him every opportunity to meet every challenge. Such a fund will enable Baby Steven to receive select and innovative treatments that capitalize on the brain’s neuroplasticity through early intervention, allowing him to optimize his cognitive and functional capability by helping him to make those new connections. As you might imagine, this road will be one less traveled and longer than most. At times we’re sure it will be full of tiring steep climbs, stomach-churning dips & grip-tightening curves. But, it is a journey that Baby Steven & Team Steven are eager & determined to travel, and one that will no doubt have countless opportunities to stop and enjoy the scenery and admire the progress.
With the love and support of everyone who will touch Baby Steven’s life, we are very hopeful that he can achieve every dream he ever dreams and fulfill every adventure our little superhero will conjure up. He has and will continue to make this world a better place because of what this little fighter of ours learns along the way, and he will surely give back to all of us ten fold.
A list of some of Steven’s non-traditional "classes" follows. Your help in providing "scholarships" to any or part of them will be profoundly appreciated. He is a fighter; he has already surpassed doctor’s expectations; and we believe he has just gotten started!
IF YOU WOULD PREFER TO NOT USE A CREDIT CARD YOU CAN SEND YOUR DONATION BY CHECK
Payable to Steven Weil
Believin in Steven Fund
21265 W Willow Dr.
Kildeer, IL 60047
1 "Lab": $7,500
Cognitive Restructuring (Anat Baniel Method)
1 "Class": $135
1 Day-long "Seminar": $270
1 Week-long "Workshop": $1,350
Intro to Physical Therapy
1 Daily "Workout": $30
Week of "Workouts": $150
Intro to Speech Therapy
1 Weekly "Studio": $30
Intro to Occupational Therapy
1 Weekly "Training": $30
G Tube Specialists: $50 per visit
Disposable Cleft Palate Bottles & Nipples: $55 per day
Superhero Food: $75 per day
Play Time Nurse Play Dates: 4/week: $30If you would like to read Baby Steven’s full medical journey you can read the details down below:
Qualified Baby Sitter: $100/night
Steven was born at just over 29 weeks (almost 11 weeks early) with hemifacial microsomia, a condition on the Oculo-Auricolo-Vertebral spectrum affecting the development of the ear, jaw, vertebrae, and often the eyes. More critically, seven days after birth, a head ultrasound showed that Steven had sustained a severe intraventricular hemorrhage, a type of brain bleed for which premature babies are at risk. Due to clotting and scarring of the ventricular system, he then developed hydrocephalus, a condition that can lead to fatal pressure in the brain. Additionally, the extent of the bleed caused periventricular leukomalacia damage, a type of brain damage surrounding the extent of the bleed. Paige, Matt and Steven’s care team made the difficult decision to have Steven go under a second brain surgery to receive a shunt to control the fluid supporting his brain. Due to the damage incurred, doctors informed Paige and Matt that Steven may not walk or talk. With the bleeding in his brain regulated, the care team focused on his ability to feed and breathe on his own.
Steven then showed signs of severe acid reflux. After trying various non-surgical changes, including formula changes and feeding tube positioning, he underwent a third surgery to have a gastronomy tube (G-Tube) inserted directly into his stomach through his belly so that he could receive nutrients while the speech therapy team continue to work on oral feeds. But we weren't quite done yet...
Oculo-Auricolo-Vertebral spectrum disorders are a collection of related congenital defects occurring in the first few weeks of gestation, usually affecting only one side of the face. In Steven's case, in addition to vertebral malformations which may lead to scoliosis, his jaw was underdeveloped. This pushed his tongue into his airway, creating an obstruction which prevented him from breathing safely on his own. In lieu of a tracheostomy (hole in the neck below the pharynx), which is not without its own risks and complications, the surgical team performed a mandibular distraction where Steven's jaw was broken in two places and gradually lengthened with the help of titanium expanders inserted under the skin. This moved the tongue forward, and with Steven’s airway cleared, he was finally able to be discharged from the hospital.
Steven’s jaw brackets will be removed through another surgery in February and Paige and Matt are actively working with Steven and his therapy teams on oral feeds.
The above does not encompass the entire complexity of the hand Steven was dealt and Steven will require a very tailored education to help him make new connections and optimize his cognitive and functional capacity. As Steven grows up. We will learn more on what therapies and devices are best fit to support his unique needs. As of right now our Superhero will take on the following challenges:
Grade 4 Brain Bleed
- Weekly Physical therapy
- Weekly Speech therapy
- Weekly Anat Baniel therapy
- Unknown Complications related to cerebral palsy
- Ventricular-Peritoneal (VP) shunt revisions due to infection or shunt failure
- Hearing aids (On going)
- Ear cosmetic repair
- Lateral Cleft lip correction (24 months)
- Second Mandibular Distraction (Age 6) to correct bite planes
- Hypospadias: 2-part surgery
- Hernia repair
- Misshapen Vertebrae: Spinal Fusion and Alignment surgeries