On February 12, my newborn daughter, Kollyns, and I were having a seemingly normal day. We cuddled, I changed her diapers, I gave her milk, I burped her, and we repeated this sequence. Kollyns was 3 weeks old, finally gaining weight after making the decision to switch to formula from breastfeeding, and things seemed to be going really, really smoothly. During daytime, we kept my 2-year-old son, Krew, on his normal schedule (going to great grandmas) to maintain a sense of normalcy and allow myself and Kollyns time to bond. Later that night, my husband Kevin picked Krew up on the way home from work, and immediately offered to take Kollyns from me so I could have a few minutes of time to myself. Something that he always offered to do because that is just the man that he is. He spent time with Kollyns and Krew while I began making dinner, and then needed to change Kollyns diaper. He noticed she was having some trouble completing a bowel movement, so he pressed her legs towards her chest to assist her. That strategy worked, just as it had before. After that, Kevin began giving her a bottle and noticed that she was much more fussy than usual.. not easily soothed which was unlike her. He tried to console her, and noticed a clicking sound in her chest, immediately concerning him. He is an orthopedic trauma physician assistant, he understood that a clicking sound over a bony region can indicate a fracture. He immediately came to me, extremely upset and stated we needed to bring her to the local children’s hospital in Indianapolis, somewhere we trusted and thought would provide the best, most expert care for our daughter. I took Kollyns, packed a bag, we dropped off our son at his great grandmas and then we rushed to the hospital, all within 20-30 minutes of this occurring.
We arrived to the hospital, waited 2.5 hours to be seen, and then eventually was seen by an ED resident who evaluated our daughter. She was seemingly okay, not in pain, and was acting like herself (sleepy and content). The resident stated that she appeared fine, and believed she was ready to discharge, but that if we wanted to get a chest X-ray, that we could pursue it. We wanted answers, therefore, we requested this to be completed. The first set of x-rays revealed two rib fractures, one that was acute or new, and one that was subacute or healing. This was shocking. How could there have been two? How was one already healing? She was seen by two other ER doctors, and then was required to complete a skeletal survey, to which we agreed. Social work and DCS then became involved for suspected child abuse. After these scans were completed, multiple doctors rushed into our room, stating “there were multiple fractures found”, but not providing us with what this meant. What do you mean? How was this possible? She was 3 weeks old and never had any trauma or external bruising, and her pediatrician (across 5 visits) never had any concerns for any possible injuries? The doctors only provided us with details when they began immobilizing her neck, stating that there was a possible “dislocation” at her C1/C2 vertebrae. We were panicked, fearing for her life. They brought her into a trauma bay and several specialties began evaluating her. Neurosurgery, trauma, a chaplain, you name it. Shortly after, the neurosurgery resident came in to speak with us about the C1/C2 dislocation, claiming that he did not see what they were seeing on the imaging, but that we would do an MRI to rule out injury. This later came back clear. I was praising Jesus that this was clear. I figured that now, our focus would be on the rib fractures. That same night, DCS and a police detective questioned Kevin and I separately. We provided our statements, voluntarily completed drug testing.. our stories matched. However, no one believed us. They made us bring in Krew to the hospital at 2AM to be evaluated, which came back completely clear. He was able to go home with his great grandparents. We stayed in the PICU overnight, where she was completely stable. That whole time, we were treated as if we were criminals.
Kollyns was evaluated again the next morning by several disciplines that, we know as medical professionals as well, were gathering “evidence” of NAT or non-accidental trauma. EVERY test came back clear. However, no one wanted to determine other possibilities of how these fractures occurred. Birth injury? Genetic condition? When I brought up these possibilities to the doctors, specifically the child abuse pediatrician, every single doctor shut them down. No one was listening. No one wanted to consider other etiologies, they were sticking with their assumptions that we were abusing our newborn daughter. We had to specifically request to see the imaging, where it was revealed to us at that time (12 hrs later) that she had 16 rib fractures. This was a sickening piece of information to hear. Something was wrong with my baby. Nothing had happened since her birth besides going to the pediatrician five times and a spinal ultrasound being completed when she was a week and a half old for her sacral dimple. It wasn’t until about 12 hours later that a geneticist came to speak with us, again, after we had to ask for this to occur on several occasions. Something genetic had to be a possible explanation, and instead of focusing on our daughter’s health, they were more concerned with falsely labeling us as child abusers. This was what they were focused on. Something that will haunt us probably for the rest of our lives. Anyone who knows us knows how preposterous this was. The geneticist ordered a blood work panel that screens for genetic causes of bone fragility, mainly osteogenesis imperfecta (OI). This genetic test takes several weeks to come back. This truly felt like a lose-lose to us; we knew these injuries were not from abuse, but we did not want to find out she had a genetic condition that will impact her for the rest of her life either. A true feeling of hopelessness and failure as a parent. But we needed answers.
On 2/14, DCS came back to the hospital, with a security officer, informing us that Kollyns was being detained and was out of our custody. I had to specifically ask the DCS worker if she could be under the custody of a family member, she did not offer me this option willingly. Shortly after, we got our attorney involved, Linda Meier. Kollyns was now under temporary custody of my mom, Colleen, and while comforting to know she would be very well cared for and loved, she had been ripped away from us at only 3 weeks old. She needed her mom and dad, the ones who were advocating for her health from the beginning. Not a single minute went by that I didn’t want to break apart into a million pieces. Not only did I miss my baby terribly, we still didn’t have answers. We were only able to see Kollyns under constant supervision of my mom. DCS did not initially provide us with details regarding visitation, again, I had to be the one to ask. From the start, DCS and the hospital’s goal was to rip our family apart.
On 2/27, we had Kollyns 2-week follow up at the children’s hospital. She first had a repeat skeletal survey and then an appointment with an NP. The repeat scan revealed that all fractures shown on the imaging were healing, and that there were no new fractures – wonderful news for Kollyns. Interestingly (and not shockingly), 7 out of the 16 rib fractures were now “unable to be seen”. Odd isn’t it? How is that possible? Wonder why this was?
During the time between our initial hearing and trial, I began researching other possibilities of what could be going on with Kollyns. After researching and talking to several mothers of families that have been through similar situations, I learned about hEDS (Hypermobile Ehlers-Danlos Syndrome), a heritable connective tissue disorder that can cause joint hyper-mobility, instability and can be a cause of fragility fractures in infants. The underlying connective tissue fragility and poor bone mineralization can cause fractures from minor, everyday activities. This genetic condition, of course, is not tested for on the bone fragility test that was completed at the hospital that we were waiting for, it was based solely on clinical observation. This should have been explored at the hospital, but at this point, I’m not shocked it wasn’t. Their entire focus was on labeling us as child abusers – not on Kollyns health. This condition could be our answer to what was going on with our sweet baby.
On 3/10, after about 15-20 calls to the children’s hospitals genetics team, I got in touch with someone to discuss Kollyns genetic testing results that were taken during her hospitalization. This test, again, only tested for a handful of genes, mainly ruling out OI. When I began speaking to the genetic counselor, she stated that she was unable to discuss the results with me, stating that it was “internal policy” to discuss the results with DCS first, and if allowed, would discuss them with me following. The children’s hospital withheld these results from me, her mother, despite Kollyns NOT being adjudicated as a CHINS. After the genetic counselor discussed the results with DCS, they called me, informing me that Kollyns genetic testing results from the panel they ran came back “clear”, however, there were two genes that were flagged as “uncertain”, meaning they had a one letter change, both linked to collagen, bone formation and osteogenesis imperfecta. Because only one letter was flagged as uncertain and not both, it did not result in a diagnosis. I brought up to the genetic counselor that I had recently been diagnosed with hEDS (over a Telehealth visit with a doctor based out of FL), and because of the heritability pattern and symptoms that Kollyns had that aligned with this condition, I believed that this could be a plausible explanation for the fractures. This genetic counselor dismissed this as a possibility. I knew that any doctor within this hospital system was not going to want to help us find answers as they already had their assumptions made. After research and conversations with a sweet mother who had gone through something extremely similar, I was able to make an appointment with a world renowned endocrinologist who specializes and conducts research in hEDS and infants/children specifically, Dr. Holick. He was based out of Boston, and he had to see us in person rather than virtually.
On 3/13, I had a zoom meeting with Dr. Holick to ensure we qualified to go see him. We did. I felt optimistic about this, hoping that he would be the key to providing us with the answers we had been searching for for over a month. During our brief zoom call, I was validated, heard and felt that we had a medical professional in our corner. Our appointment was scheduled for 3/23, seven days prior to our trial. It was cutting it close, but that didn’t matter to me. We booked our flights, hotel, and rental car, and flew to Boston on 3/21. On 3/23, we were seen by Dr. Holick. Myself, Kollyns, Kevin and my mom were evaluated. Hypermobile Ehlers Danlos Syndrome (hEDS) is evaluated by clinical observation alone – no blood work or imaging is needed as there is not a genetic test for it at this time. We had to discuss a plethora of questions relating to this condition and complete a screening tool called the Beighton scale, assessing generalized joint hypermobility. After completion of the screener, every single person received a diagnosis of hEDS. Due to the heritability pattern of this genetic condition, Kollyns and Krew both have a 75% chance of inheriting it. After careful evaluation, Dr. Holick was confident that this genetic condition was the cause of her easily fracturing, and explained the vast amount of fractures. We were so incredibly relieved to have answers.
We additionally sent Kollyns imaging and entire medical record to a radiologist we know and trust, Dr. Brett Hagedorn, for him to give us a second opinion. The first thing he pointed out was the appearance of Kollyns ribs. He provided us with a reference picture of a similar-aged infants ribs to compare, and you could see the difference plain as day. He mentioned that Kollyns ribs appeared “frail”, while the other infants’ ribs looked “robust”. He commented that hEDS can have a significant impact on bone health and that doctors should keep this in mind before racing to conclusions with infant fractures. He discussed the callus formation that was already on several of her ribs. He stated that unless we began “abusing” our child in the delivery room right after she was born, the timeline did not make sense. The healing fractures had to have occurred either in utero or during the delivery process. The new fractures were determined to be from completion of Kollyns sacral ultrasound (completed by a student first and then tech following). As terrible as that sounds, this information was reassuring to us.
On 3/30 and 3/31, we had trial. DCS had three witnesses, the child abuse pediatrician through the children’s hospital, the geneticist through the children’s hospital and the DCS case worker. These doctors did their best to “prove” NAT, however, all of their answers were with flaw. They could only state “possibilities” and not facts. The case worker during her testimony stated that she had already substantiated the case, which meant that DCS had already come to the conclusion that Kevin and I both had not only “abused” Kollyns, but “neglected” her as well. Moving this case from unsubstantiated to substantiated meant that Kevin and I both would be placed on a child abuse index, which could greatly impact our careers, when we did nothing but bring our newborn daughter to the hospital for emergency treatment when we had a concern. We learned during the trial that this was our DCS case workers first case. Ironic. A new DCS worker, with little to no education and little to no training was placed on a very medically complicated and intricate case where she had the power to not only take away our newborn daughter from us with no differentials considered from the hospitals perspective, but place us on an index that could end our careers and impact the rest of lives. What a terribly flawed system. Following DCS presenting their “evidence”, it was our turn. My mother, myself, a social worker (who completed our parenting assessments), our radiologist and our endocrinologist, Dr. Holick testified. We completely dominated that courtroom. None of our evidence could be shaken. It was fact. And DCS crumbled at trying to “cross examine” our witnesses. The truth will ALWAYS prevail. DCS had to prove three things for Kollyns to be considered a CHINS – DCS had only proven one. DCS had proved that Kollyns was a child between the ages of 0-18, and that is all they could prove. They had nothing. The judge did not rule at the end of the trial as there was a significant amount of evidence and paperwork for him to look through. He stated he would provide us with a response “quickly”.
On 4/2, our attorney personally delivered the amazing news to us in person that the judge ruled to deny Kollyns being a CHINS, was requiring DCS to unsubstantiate the claims of abuse and neglect against Kevin and I, and was requiring DCS to remove our names from the child abuse index. Everyone cried together – Kollyns was coming home! Praise God.
This was a nightmare that I would have never imagined having to go through. DCS and the local children’s hospital ripped apart a loving family due to medical misdiagnoses, leading to false allegations of child abuse. They were both focused on making a profit rather than doing what their jobs are intended to do. This is not the first time this has happened either – it happens much more than anyone thinks. This is not okay. These organizations need to be held accountable. This has taken an immense emotional, physical and financial toll on our family. It will take an extensive amount of time to heal. What’s extremely disheartening is that DCS and this children’s hospital will go on with their daily lives as normal, not understanding the significant impact they have had on us. We are hurt. We are angry. We are grieving time with our newborn that we will never get back. Any mother knows how sacred the first few weeks with your newborn are, and it’s something I will never get back. And that’s completely heartbreaking.
Through all of the bad, though, there has been so many people who have stayed strong and consistent for us. There are so many people to thank that have shown unwavering support, love and guidance during this time. Our family, work colleagues, Dr. Michael Holick, Dr. Brett Hagedorn, Stephanie Whiteside, Linda Meier…. all who truly cared about our daughter and helping us get to the root cause of what was going on – thank you from the bottom of my heart. I hope that by sharing our story, I can help another family in the future. This is not the area I want to have experience or recommendations in, but for any family who has to go through this misery in the future, I am here for you, I see you, and I believe you. Be cautious of where you are taking your children for their care. Be persistent in finding answers. There are “good” doctors out there, but they aren’t easy to find.
Grieving. Healing. But at least we are doing it together.
Best,
Madeline
