I would like to introduce you to Lynnsi.
Original Story: March 19th, 2013
My story started a little over 3 years ago. My daughter was almost 6 months old and started severally vomiting, she couldn’t hold anything down and that was the day our world changed forever, for 10 days straight she continued to vomit everything she ate, she lost 5 pds and could barely hold her head up any more, she cried all the time and when I wasn’t working I was holding her feeling so helpless, In the 10 days we say her Predication 3x and went to the ER 2x, every time I was told that they saw No signs of abuse and that she had acid reflux and changed her formula several times, But deep down I knew something was wrong, My 3rd and final trip to the ER I said I was NOT leaving until they figured out what was wrong with my baby, a couples of days earlier, Holding her and she had head-butted me in a crying fit and had hit my tooth just right and left a small bruise on her face. (I knew exactly where the bruise had come from) But that bruise is what saved her life!!! The doctors then saw “Abuse” so they finally did a CAT scan, and found 2 brain bleeds, I was shock and horrified when the doctors informed me that she had been diagnosed with Blunt force trauma to the head!!! I knew that those injuries were not caused by me, and at that time I felt like my fiancé at the time who had been with me the majority of the pregnancy and the birth couldn’t have done this either, before I knew it we were separated and being investigated!!! But as I was being investigated my daughter was lying in PICU, it was then I knew my daughter needed me, but I was being investigated for what felt like eternity, finally they let me and my fiancé back in the same room and they drug tested us both and he failed for cocaine!!! I couldn’t believe it, my world had falling apart in a matter of hours my daughter was in ICU holding on for life, a man that I had trusted and left my daughter with had betrayed me in the worst way and to top it off I could not/ would not go home with him and so I was homeless. I also learned that when my daughter had needed me the most I had lost temporary custody while they sorted everything out. He had later confessed and was arrested, (side note he served 8 month and 10 years’ probation, a very small price to pay). Enough of him and on to my miracle baby I hired a lawyer knowing full well I had God and the truth on my side. My daughter was shortly returned to my custody (but not before CPS tried to keep her from me, for the simple fact that I had no idea how to take care of a child with special needs) and then the road to recovery began, while in the hospital she had her first brain surgery where they put a shunt in her head to drain the fluid in to her stomach. she was released from the hospital and within a few short days her shunt was clogged and they had to go back in, this time they removed her shunt, and she was given a craniotomy, ( a quarter size hole in her skull). After all this she spent a total of 3 weeks in the hospital. Then started the doctor’s visits and therapies, the doctors told me there was a very good chance she would never walk or talk. But her physical therapist gave me the best advice and told me to never treat her like she has a disability. I did just that we had the seizure scare and then an EEG, we saw an eye doctor for the haemorrhaging behind the eyes and she was later released form the eye doctor. we started regular MRIs every 2 weeks, I was told this would continue for a life time but going from every 2 weeks to once a month to every 3 months and so on, but one day we were visiting the Neurologist and he was looking at her last results and he says to me, she was completely healed, after a years and a half of 6 therapies and doc appointments a week, I am told my daughter was completely healed, I have no idea how to take that but I am going to take it and be so happy, She is almost 4 and in a small preschool setting with typically developing children she is learning to read and write she wrote her name the other day and I couldn’t be prouder, she also is just started a program where is learning Spanish, she is also very athletic and playing soccer and is in a gymnastics class. I see stories all the time about children who aren’t doing as well as mine, and it breaks my heart and I fear the day that I will have to tell her that a very bad thing happened to her when she was a baby, this is the first time I am actually really telling our story I have tears in my eyes just typing our story. But I feel like our story should be told partly because I want to give parents hope that God, hard work, determination, and lots of Love can make a big difference and also for awareness my daughter’s pain and suffering could have been prevented!! One day I will have to explain to her where her scars came from and one day I will have to tell her that someone chose drugs before there family. I have added a before surgery pic an after surgery pic and a very recent pic of my baby girl, I am truly blessed.
Update 2020: So much has happened in 6 years… it’s hard to put so many thoughts and emotions into words. My biggest thing is I don’t think people realize how much this has impacted our life in 10 years. Every year on our anniversary I really try and celebrate life and focus on the positives. We are truly blessed, however there are so many scares that people don’t see. My daughter does suffer from ADHD, migraines, anxiety and tires easily; All stemming from her traumatic brain injury. I also struggle on a daily basis with mom guilt am I pushing to hard or not hard enough? Is she living up to her full potential? There are days that she surprises me and Surpasses all expectations and there are other days she bearly gets out of bed and can sleep for 16 hours. She is finishing up the 5th grade in the gifted and talented program at school, she has cheered for our local peewee football team for the past 6 years and loves it. She also sings in her school choir and plays soccer and enjoys just being a kid and hanging out with her friends. She is creative, funny and kind. Through all of this my daughter has taught me perseverance, to judge less, love more and that it’s ok not to be ok.
I would like to introduce you to Albert.
Original story March 18th 2013
My son Albert was shaken in October 2011 when he was just shy of 3 months old. He underwent surgery to have a shunt placed for his subdural hematoma and wore a neck brace for torn muscles. He was terribly close to not surviving his injuries and after the surgery he required a blood transfusion. After 10 days in the hospital, he came home and began therapy. Today he is 19 months old and he has alot of issues due to the trauma but on the whole he is doing wonderfully! I love him. His father who caused these injuries is being sentenced this Friday, 3/22/13, and I will be wearing my dark blue for not only my son but shaken babies everywhere.
Update March 2020
Albert’s dad spent 3 years and 4 mos. in prison. He took and plea and was sentenced to five years but only served the 3 years and 4 months. Albert is 8 years old now and in 2nd grade he is doing well but still suffers from a lot of the damage inflicted on him as an infant. His left eye only has grey vision but he wears glasses and sees pretty well otherwise. He is a bright little boy. He has a g tube but we only use it for bolus feeds as needed. His fate could have been far worse but with early intervention and teaching him he is flourishing and doing very well. The damage is going to be with him for life because of his father’s poor choice but we never gave up hope. Sadly, I see too many child abuse cases happening in our society I have written letters and even emailed the White House so hopefully we can have stiffer penalties for offenders. NEVER SHAKE A BABY! Walk away. Take a breath because that moment choice will effect their entire life.
I am trying to balance home school at the moment but that is my addition. Wow time really flies but overall there have been a lot of changes to our lives. I lost my home I lived in 16 years to try to balance work and care for Albert. His SSI was severely cut so we couldn’t afford the mortgage anymore. I since married and have 3 daughters as well as 3 sons now.
I would like to introduce you to Charles.
Original story: March 22nd, 2013
My son Charles was born November 1996. In April 20,1997, my live in boyfriend was watching my son while I was working at a local nursing home. That day our lives were changed forever. While I will never know the full story from that day, my ex admitted to shaking Charles while he was standing and then threw him on the floor. When I arrived at the hospital, I was met with chaos. Life flight was on the way to transfer Charles to a bigger hospital. Charles was diagnosed with Shaken Baby Syndrome. He had a subdural hematoma at the front of his skull and a huge bruise at the back. After a few days in ICU, they determined that he had bleeding in his eyes, broken bones, and bleeding on the brain. He also started having seizures. He underwent surgery with which I credit his amazing doctor with saving his life. Charles was the 6th SBS baby at the hospital in 6months time..and he was the only survivor. When we came home, it was tough. Charles had 12-24 seizures a day. He had them up until the age of 3yrs old. We went to different therapists for help with teaching Charles to talk, walk and be “normal.” The first few years were rough and filled with plenty of tears. I went from being a normally quiet person to a person who had to fight for my son (and myself). Luckily we have an amazing support system and I live in a small community which stood behind us. Charles is now 16 years old. He functions at the level of about a 2nd grader in most aspects. Health wise he is in perfect condition. We still see several specialists to make sure he has no setbacks. Since this has happened, I have taken on the role of advocate. We have visited my old high school numerous times, been on the Montel Williams Show, been interviewed for several local papers and sharing our story with anyone who asks. My goal is to raise awareness so that no other parent or child has to go through what we do.
Update 2020:
In January 2018 Charles moved into a local residential home with 2 roommates and 24 hour staff. Unfortunately it was not a good living situation with undertrained staff. He moved back in with me briefly for almost 2 months. Then in January 2019 he was fully moved back in with me. In April 2019 Charles moved into another home in a town 30 minutes away.
This new housing and new staff has been just what we needed. Charles is on a regular schedule. During the weekdays he goes into Discovery through this same company. They do outings in the community including neighboring towns. He is given 2 choices to pick from and has been enjoying that new responsibility. At home, he is cooking, cleaning and engaging with others. He has even learned to use the phone correctly. He loves to call and chat or just say hi.
Charles still loves going to concerts, hockey games and indoor football games.
Last year we had the pleasure of meeting the owner of the NTX Savages named Bo Brown after her team played our local Sioux City Bandits. After hearing Charles’ story, she made him a member of the team. She wrote out a contract and paid him. The whole team came out of the locker room to do a team picture with Charles in his jersey. Bo and the Savages are hoping to be back again this year. And we will be there to cheer them on…although Bo has said that she is working on letting. Charles do a couple of plays in the game. He has had many new adjustments in the last couple of years but he is doing amazing. I treasure our Tuesday date nights and his phone calls to chat.
I would like to introduce you to Jared.
In 2002, my husband & I became foster parents. Our first foster placement was a 4 month old Shaken Baby Syndrome survivor. A few weeks later, the foster agency told me they heard the hospital admitted another shaken baby. The agency had no information on gender, race or age of this new victim because this child was not expected to make it. I said I want to foster that child. I called each day but there were no updates. My current foster son gave me the passion to “save them all”. Before him, I didn’t know much about SBS, & the Internet was just evolving in 2002 so not much information out there.
Then one Friday night, I got a call that the child had survived & needed a foster home starting Monday morning. They told me this 5 month old boy was in bad shape, couldn’t feed, had left sided paralysis, 2 broken legs, a broken back, hemorrhaged retinas, a very large incision on more than half his head with staples still in. He was considered a vegetable who was never expected to walk or talk. I spoke to the Guardian at litem assigned to the baby. He said he had been told not to spend time on this case because this child was not expected to make it.
I did not know how long this boy had even been in the hospital but I knew it couldn’t be long since he still had staples in his head. It seemed they basically gave up on him. I learned he had been pronounced dead & his bio family notified. Later a nurse saw him move & Doctors brought him back to life. I worried I had made the wrong decision by agreeing to foster this child since my husband & I both worked full time & I already had a SBS foster baby in day care with no openings for another child. I had no medical training.
I went to the children’s hospital to pick up this baby since the foster agency said they had no other foster placement for him. They told me to plan on 4 hours at the hospital to learn all the therapies, feeding tube, & care he needed. I asked the agency to continue looking for another foster placement because it sounded like this baby needed more care than I could provide since I had to work full time & knew finding day care would be very hard since most facilities did not accept state funded children, especially one needing much more care than they would be paid for.
I nervously got buzzed into the locked hospital ward. A nurse was sitting at the nurses station bottle feeding a beautiful, bald, chubby baby. I selfishly thought to myself that if only I could just have a baby like that, my life would be perfect, but I could not have children, so we became foster parents with the hope of adopting. We were not particular about age, race, gender or special needs. We just wanted to be parents. We expected there to be heartache from this fostering journey, & some was immense. Some pain still lingers. We were foster parents 13 times over the next few years.
I went to the hospital room # of the foster baby, but there was no baby or toys or anything at all in the very large room with rehab equipment & therapy tables & a full size bed. No baby crib. My first thought was he had passed away & the room had been cleared out. Several social workers showed up & they were also baffled about the whereabouts of the baby. Drs & therapists came in to join the training session. Still no baby. Then a nurse walks in with that same beautiful baby she had been bottle feeding & announced he had just started bottle feeding so they were able to remove the feeding tube that morning. This was a huge shock to everyone given his poor condition. I learned his name was Jared. A staff member laid him on a giant therapy table & starting removing the staples from his head. The Social Workers couldn’t handle this & had to leave the room, so I followed. The screams from that baby had us in tears. Drs said he would never walk or talk. They said there was just to much brain damaged or missing. Jared required 7 blood transfusion from brain bleeds & to replace blood that had to be drained during emergency craniotomy surgery.
There was something deep in this child’s eyes that told me different. I had never been moved like this before. I think many people were concerned about me as his foster parent when I said he will be able to walk & talk because he has “The Will”. I can see it in his eyes & feel it in my heart. I didn’t care that they all thought I was unrealistic & crazy.
I was so anxious to get to a phone to call the foster agency to tell them NOT to find another family for this child. I wanted to foster this beautiful boy that had already stole my heart & become my whole world. Back in 2002, cell phones were prohibited in hospitals so I left the phone in my car. The agency said they had a feeling this would happen, so they had not even tried to find another placement for this baby boy. His great aunt in an adjoining state was already in the process of adopting him, so falling in love was not emotionally healthy, but our love & bond became very strong. It was very evident to everyone that this child thrived from our love & care & belief in his abilities, so his Bio Mom chose to give up her parental rights so we could adopt him, & his Great Aunt agreed. His Bio-Mom is not believed to have caused his injuries.
It is now 2020. Jared just turned 18. His high school graduation is May 2020. He makes the honor roll. He will go on to our school district 18-21 Special Needs program. He may be able to go on to a College Vocational Program after that. He is very outgoing & social. He is always smiling. He is athletically gifted. He has been on the high school bowling team for 3 years with his high score 255. It is a very hard team to make, because in a school of over 1300 students, only 13 boys & 13 girls make the team. He makes half court shots in basketball regularly, sometimes one handed. He is on an IEP & in Special Ed but takes many regular classes with Para support. He plays every sport that our local Special Olympics team offers, & plays them all very well. He has Gold Medals in Aquatics, Tennis, Golf, Softball, Volleyball, Soccer, Bowling & Basketball. He also plays flag football on a special needs team & plays Unified Soccer & Unified Basketball.
When he last saw his neurosurgeon at about 2 years of age, we could see an air ambulance landing through the exam room window. The Neurosurgeon walked in the room & I said to Jared “what’s that?” Jared said “helicopter”. The Neurosurgeon said that he could not medically explain how my son was able to talk & say that 4 syllable word perfectly. The Dr actually called it “MIRACULOUS”. His brain damage was very extensive, but sometimes the brain will somehow re-route, the Dr said. His left paralysis was improving. He was crawling. Once again, I simply said “Jared has THE WILL”.
Jared learned infant sign language. He started to walk & talk sentences at 3 years old. He potty trained at 6 years old. We still have many daily challenges & Jared has a lot of behavior issues, but he is a blessing & has taught us so much about life & unconditional love. He takes over 10 prescription medications daily for ADHD, impulse issues, mood disorders, behavior issues, depression, anxiety, seizure disorder, insulin resistance, allergies, & other conditions. He has always been a victim of bullying, even by adults. Sometimes it leaves me in tears, but Jared will say “it’s over, it’s done, it’s in the past, so we have to forgive & move on”. Jared is an amazing person with a great attitude. I believe people that have let him into their lives & gotten to know him have been truly blessed to witness the miracle that he is. Jared says he has overcome so much & succeeded because Jesus is in his heart & loves him.
By Deirdre Brehaney from Shawnee, Kansas
O3/23/2020
I would like to introduce you to Christian.
Today would have been my son’s, Christian Matthew Barker, 16th birthday. I should be taking him to get his Driver’s License & celebrating but instead, I had to go to the viewing of a fellow Soldier’s daughter. She too was taken by this senseless crime. SBS is 100% preventable!!! Walk away, make a call, close the door….anything but pick up the crying child. Happy Birthday Christian….I’m trying to get the word out!
Stop Shaken Baby Syndrome Inc. 