It’s a terrible thing to see your child suffer. And knowing that these little ones aren’t old enough to understand what they’re experiencing or express their pain and fears can make it all the more heartbreaking.
When Ben was born six weeks early, his parents, Kate and Clay, were not prepared for the scary news that immediately followed. They were told that Ben had CHARGE Syndrome, a complex genetic syndrome that affects 1 in 10,000 children and often causes life-threatening birth defects. In Ben’s case, almost every body system is affected, from his hearing and eyesight to his ability to swallow.
Ben spent the first two years of his life in and out of hospitals. His health had steadily declined until he was admitted to the Pediatric Intensive Care Unit at SSM Health Cardinal Glennon with acute respiratory illness. Within the first 24 hours, doctors and nurses accomplished nothing short of saving his life several times, and just three weeks later, he returned home in good health.
Miracles like this happen every single day at SSM Health Cardinal Glennon, thanks to doctors and other caregivers who have the skills, dedication and commitment to care for medically complex children like Ben. We rely on the support of friends like you who enable us to continue our lifesaving mission of providing exceptional health care to all children, regardless of their family’s ability to pay.
We are blessed to have the faith and trust of Ben and his family, and to have friends like you who support our lifesaving work. Your heartfelt donation will not only impact the lives of the children in our care, but also contribute to our Mission:
“Through our exceptional health care services,
we reveal the healing presence of God.”
Meet some Cardinal Glennon kids you can support today!
Jessica and Mykel Ernest from Poplar Bluff, Missouri were happily expecting their second child in early 2019, when the unexpected happened. At 20 weeks and 6 days, Jessica began losing amniotic fluid. This was devastating news to the couple, as both knew the risks of this happening so early in her pregnancy. Though she was dilated to 3cm, Jessica was NOT experiencing any contractions, and her local obstetrician continued to monitor her in the hospital, in hopes that the leak would re-seal. Jessica remained in the hospital on bedrest for the next five days to receive IV antibiotics. There was no further dilation, and the leak slowly decreased over that time.
During that time, however, Jessica and Mykel began their first conversations about what could happen if labor ensued, and they both agreed they wanted all resuscitative efforts done, should their child come early. After five days in the hospital, Jessica was went home on bedrest. Five days after that, Jessica had a “gush of fluid” that puddled on the floor, and she made a frightened call to the labor and delivery unit from which she had just recently been discharged.
She returned to the hospital, where an ultrasound revealed an extremely low amniotic fluid index. That night, at 22 weeks and 2 days pregnant, Jessica was transferred by ambulance to SSM Health St. Mary’s Hospital, where she began receiving steroid shots because the baby’s lungs were still not fully developed. Two days later, Jessica began having contractions and the next day, Friday, she developed a fever, a high white blood cell count and tachycardia. Testing confirmed she had developed chorioamnionitis, a bacterial infection affecting the membranes that surround the baby and the amniotic fluid. On Saturday, it was decided that Jessica needed to deliver, and the staff began to prepare her for what might happen. Jessica recalled, “They prepared me for the possibility that our baby might not survive delivery,” she said.
At only 23 weeks gestation, Max was born at 3:07 p.m. on Saturday, February 9. He was 11 inches long and weighed 1lb. 0.1oz. He was whisked to the corner of the labor and delivery room by the staff, where they assessed him and attempted to place a breathing tube. “After the second failed attempt at tube placement, I was told to prepare for his death, as they might not be successful”, Jessica said. “They did get one in, though, and they started getting him ready to send to Cardinal Glennon.”
Jessica had her own issues after Max’s delivery. Her white blood cell count had skyrocketed to 44,000 from the chorioamnionitis and had trouble delivering the placenta. She received a blood transfusion and was immediately taken to surgery as Max was being prepared for transport. The Cardinal Glennon transport team was able to bring Max to Jessica just before they left, giving her a transport towel to wear so that he could have something with her scent until they could be together.
Jessica recalls, “It was all so surreal. It’s hard to remember details, but I remember he was alive and fighting. I knew the NICU at Glennon had NicView cameras, and I couldn’t wait to be able to see him,” she said. “I first logged on to see him at about 1:00 a.m. and Mykel and I watched him for 3 solid hours! I knew my father-in-law was with him, but I hated that I couldn’t be there. Being able to see him through the camera meant everything,” Jessica said. Three days later, Jessica was able to join Max at Cardinal Glennon, and hold him for the first time. Holding him was nothing short of challenging. “He was intubated, with a ventilator, umbilical lines, and intravenous lines for IV nutrition, just to name a few things. His first seven weeks were focused on survival. I remember the neonatologist telling me, “He’s likely going to get a lot sicker, before he gets better,” Jessica said. Shortly after that conversation, that is exactly what unfolded. Max experienced an esophageal perforation when an attempt was made to place an orogastric tube for breastmilk feedings. Those feedings were put on hold and Max was placed on ten days of IV antibiotics. Max had two additional bowel perforations after that. For both of these, the surgeries were performed in the room at his bedside; the first surgery in the middle of the night, and the second during the day. All this happened within the first 16 days of life!
While his bowels rested and healed, Max’s lungs were fighting their own fight. Though he had been receiving hydrocortisone since birth, he had PIE (prematurity-induced-emphysema). His oxygen requirement continued to rise, as did his Co2 levels. Multiple ventilator options were tried to no avail, and stronger steroids were discussed, but avoided due to the potential impact on his fragile bowels. “We all knew steroids couldn’t grow him new lungs. They would just help with the inflammation so that his lungs could be more efficient,” Jessica said. “I remember being scared and asked my neonatologist, ‘Have you ever seen such a small baby with lungs this sick go home?’ His response to me was ‘yes, and I have faith to expect Max could do the same,’” said Jessica. Eventually a stronger steroid was started, and within a week, Max made a complete turnaround, with no untoward effects to his bowels.
The next several weeks were a rollercoaster of successes and challenges. Jessica never left the hospital; she and Max experienced Valentine’s Day, St. Patrick’s Day, Easter, and months of time together in their hospital room. Living over two hours away in Poplar Bluff, husband Mykel and their older son, Jack, visit each week. After almost three months, Jessica has formed many bonds with the staff - everyone from the nurses and doctors to the housekeepers, maintenance staff, lab technicians, and more. Jessica, a nurse herself, credits the staff with making her journey here tolerable. She says, “The people here invest in their patients and the parents. My faith has definitely grown since I’ve been here, and the little things that people do mean so much. I have so many examples of gestures and amenities that have impressed me. Nurses have created custom onesies for Max, did an Easter photo shoot with him, gave him an Easter basket, and welcomed him to the ‘3 Pound Club’ with a sign on his door. I have taken advantage of the Parent Support Group, the Nic View cameras, and the Ronald McDonald House and Family Room. Staff use every opportunity they can to teach me something, and they are constantly asking me if I need anything or just need to talk.”
There is still a long journey ahead, but currently, Max is making great strides. He is doing infant-driven feedings (both breast and bottle feedings), he is weaning from his CPAP (continuous positive airway pressure), and he has plenty of snuggle time with mom. Jessica is most looking forward to taking Max outside for the first time, and making plans to go home. Just before Mother’s Day, another of Jessica’s highly anticipated wishes came true. Her older son, Jack, was willing and able to hold Max for the first time. Jessica is thankful for the amazing care Max has received at Cardinal Glennon, and just as thankful for the donors that support it. “From the atrium and kid-friendly spaces, to the meal tickets for breast-feeding moms, everything here has been a blessing. We still have a way to go, but I draw strength from Max, and we’ll do it together.”
Sarah Wilson, and her husband, Jeremy, dreamed of having another baby. After going through IVF and a miscarriage, they feared that dream may never come true, until they received a positive pregnancy test.
When Sarah was 26 weeks pregnant, they learned that their unborn baby had a congenital heart defect. Upon recommendation from her obstetrician, Sarah and Jeremy sought out a fetal care team and a pediatric cardiologist at another hospital. Baby Lillian’s diagnosis of Tetralogy of Fallot with Pulmonary Atresia was confirmed, which would require surgery as soon as she was born.
“All I could focus on that day were the negatives I was being told,” Sarah said. She remembers hearing, “You won’t be able to hold her. She’ll go straight to the NICU. You won’t be able to feed her.” The rest of Sarah’s pregnancy was filled with fear, worry, multiple doctors’ appointments and a great deal of research. That research led Sarah and Jeremy to SSM Health Cardinal Glennon and to Dr. Charles Huddleston. Coincidentally, Jeremy was followed at SSM Health Cardinal Glennon as a child for cystic fibrosis, so it was a huge comfort to them that Dr. Huddleston was part of a hospital and mission they trusted.
Lillian was born on May 31, 2017. Sarah recalls that she was, “blue all over, and not crying. I was able to see her for only seconds because she went straight to the NICU.” Two days later, Lillian was transferred to the Dana Brown Level IV Neonatal Intensive Care Unit at SSM Health Cardinal Glennon. “Nurse Tricia was the first NICU nurse that we had. She gave me pillow, moved Lillian’s cords and wires, and placed Lillian on my lap. I was finally able to hold my baby for the first time, at 4 days old,” Sarah says.
When Lillian was 6 days old, Lillian went to the operating room for her first heart surgery with Dr. Huddleston. “Walking into the Pediatric Intensive Care Unit room and seeing her sedated, intubated, and hooked to so many tubes and wires, was heart-wrenching,” Sarah recalled. “But Lillian was here and that is what we focused on.” After a few scary moments following her surgery – Lillian went into cardiac arrest twice in the PICU – Lillian began her recovery. She went home for the first time on June 17.
Approximately two months after her surgery, a CT scan revealed Lillian had an infection growing towards her heart. Cardiothoracic surgeon, Dr. Andrew Fiore, performed surgery to clean out the infected tissue and place a wound vac device to help speed healing. In the subsequent weeks during her recovery, Lillian’s heart stopped again. The PICU team worked for over an hour doing compressions, and finally placed her on Extracorporeal Membrane Oxygenation (ECMO), a treatment that uses a pump to circulate oxygenated blood back into the bloodstream.
“That day, the world was crashing down on me,” Sarah said. “We had no answers as to why Lillian’s heart stopped, and no idea if she would come off the ECMO. It knocked the breath right out of me to see a machine keeping my daughter alive. At one point, I locked myself in the PICU bathroom and just cried on the floor. I learned the power of prayer. I leaned on God and others to pray for Lillian and help to keep her alive.”
In an effort to help Lillian come off the ECMO, doctors Huddleston and Fiore planned another surgery to place a shunt in Lillian’s heart. Sarah remembers Abbie from Child Life coming into her room the day of surgery, having made a beautiful painting of three purple and pink butterflies out of Lillian’s footprints. “When the operating room was ready for her, we kissed her little cheeks, praying it wasn’t for the last time. The staff came in to wheel her away, and we found ourselves in an empty PICU room not sure where to go from there,” said Sarah. By later that evening the new shunt was in place and working, and Lillian successfully came off ECMO. Lillian’s recovery was then complicated by several episodes of seizures, but after a 30 day hospital stay, Lillian was finally able to go home – a day Sarah and Jeremy prayed for but were terrified would never happen.
On December 27, 2017, Lillian had her full repair surgery. The eight-hour surgery placed a conduit made of donor tissue and repaired the two holes in her heart. Sarah and Jeremy had the pleasure of meeting the donor’s family this past year. Sarah described that meeting as one that “brought so much peace and hope between both of our families. It was an indescribable experience."
Lillian is now 19 months old and thriving. She just started to walk and is slowly starting to say some words. She gets occupational therapy once a week and has a nutritionist working with her to help her gain weight. Her pulmonary artery continues to narrow so she is closely monitored. Her next heart surgery will likely take place within the next 1 – 4 years.
Sarah sums up her feelings today by saying, “Although we can’t really fathom going through another heart surgery again, we know that it will be okay since she has Dr. Huddleston and all of Cardinal Glennon there waiting for her. The impact that the Dallas Heart Center team, Cardiothoracic surgeons, NICU, PICU, and TCU teams have had on us is indescribable. We have made Cardinal Glennon our home away from home for the past year and a half and truthfully owe everything to them. Lillian is still here and reaching milestones and I truly don’t believe that would have been possible without the skilled hands, care, and love Lillian received from Cardinal Glennon.”
When Matthew Shores was 2 months old in 2010, Matthew’s pediatrician noticed that he had an abnormal triangular head shape, including forehead ridging. He referred the family to SSM Health Cardinal Glennon Children’s Hospital at SLU. It was here that Matthew’s mother Candice met Dr. Alexander Lin, MD, the Director of the St. Louis Cleft-Craniofacial Center at SSM Health Cardinal Glennon Children's Hospital. He is a member of the SLUCare Physician Group, and board certified by the American Board of Plastic Surgery.
Dr. Lin diagnosed Matthew with congenital metopic craniosynostosis at 3 months of age. Craniosynostosis is a condition that happens with about 1 in every 2,000 births. The infant brain triples in size during the first year of life, allowed by the multiple growth sutures between the craniofacial growth plates. In craniosynostosis, the suture is fused, resulting in abnormal growth and head shape, and restriction on the brain that could lead to increased intracranial pressure, which can impair the development of the brain, vision, or airway.
Craniosynostosis requires reconstructive surgery to increase the space in the skull, as well as to re-shape the bones to create a normal head shape. When Matthew was one year old, the Plastic Surgery team performed fronto-orbital advancement and cranial vault remodeling to move his eye bones and forehead bones forward into a more normal position and make more room for the brain. Patients with cleft-craniofacial conditions are followed regularly, and as Matthew grew, five years later he had areas that needed more bone. To minimize needing bone grafts from other areas of his body, Plastic Surgery used donated bone calcium chips to pack these areas of missing bone. Unfortunately, Matthew’s body dissolved most of those donated bone chips, and required him wearing a soft helmet and avoiding sports, until he could get a different reconstruction.
Eventually, Matthew would need another surgery. Throughout that time, Matthew’s passion to play baseball (which was already strong) grew stronger. His care team worked to have a custom protective helmet made for him, because he so desperately wanted to play. In the Summer of 2018, he tried out for 4 select baseball teams. He received 4 call-backs and was told was told that even though another surgery was planned for Matthew in July, the team would hold spot for him.
In planning for Matthew’s next surgery, Dr. Lin used in-house 3D-printing technology at Cardinal Glennon’s 3D Printing Center of Excellence, to create a model of Matthew’s skull, and a guide for his complex three-dimensional skull defect. This 3D-printed guide allowed him to find the perfect bone graft donor site from a different area of his skull, that perfectly matched and filled his skull defect. This would carry less risk of bone graft absorption since they would be transplanting his own bone. In July 2018 at age 8, Matthew had that surgery, utilizing the 3D-printed guide to obtain his own bone perfectly shaped for the skull defect. The surgery was successful, and Matthew played baseball that summer, calling Dr. Lin his “hero”. Matthew will have his 1 year follow up on August 13, 2019, and he looks forward to seeing Dr. Lin to share all of his baseball adventures from this season.
Jennifer Haver remembers her pregnancy with daughter, Lakynn, now two years old, very vividly. In the early months, she was closely monitored by her obstetrician at SSM Health St. Joseph Hospital-Lake St. Louis for depression, anxiety, fatigue and tachycardia. Jennifer was placed on medication to address these symptoms and remained out of work for a couple weeks. Despite her symptoms, her 20-week prenatal ultrasound showed that her baby was just fine.
At 27 weeks and 6 days, Jennifer recalls the moment when she “just didn’t feel right. I had a gut feeling something was wrong, and all of a sudden, I found myself diaphoretic and leaking what I thought was my amniotic fluid.” Her OB instructed her to go to the hospital, where she had a magnesium drip to stop her contractions. Her water had broken, almost 13 weeks too soon. For the next several weeks, doctors monitored her amniotic fluid leakage, and she saw many specialists who managed both her health and the health of baby Lakynn. At 30 weeks, the monitoring eventually revealed that baby Lakynn had Tetralogy of Fallot and a cardiologist recommended a higher-level ultrasound and additional genetic testing. These tests revealed that Lakynn was positive for DiGeorge Syndrome.
DiGeorge Sydrome is a disorder caused when a small part of chromosome 22 is missing. It occurs in about 1 in 4,000 people and the deletion results in the poor development of several body systems. While the symptoms can vary, they often include congenital heart problems, specific facial features, developmental delays and learning problems. Associated conditions include kidney problems, hearing loss and autoimmune disorders. Although there is no cure, treatment can improve symptoms and life expectancy may be normal.
Jennifer remained in the hospital, with Lakynn’s father, Tyler, faithfully by her side, in order to delay delivery as long as possible. Baby Lakynn was born on May 10 at 6:01am, weighting only 3 lbs. 1 oz. She was immediately intubated and transferred to the birth hospital’s Neonatal Intensive Care Unit (NICU), where she remained for three days. She transferred to SSM Health Cardinal Glennon’s Level IV NICU under the skilled hands of the Neonatal Transport Team and it was there that Jennifer and Tyler were able to finally hold Lakynn for the first time.
While Lakynn’s care team had initially wanted her to reach 5 pounds before her first heart surgery, it soon became clear that it could not wait, and Lakynn underwent a 10-hour heart surgery when she was just two weeks old. Jennifer and Tyler recall the long wait and how vulnerable they felt. Upon arriving in the Pediatric Intensive Care Unit (PICU) after surgery, they were told that they only had a few minutes before Lakynn had to return to the OR due to a clot in her newly-placed shunt. “They honestly didn’t know if she would survive,” Jennifer said.
But she DID survive. The next few months included more surgeries and procedures. She had a fundoplication and gastrostomy button placement to assist with feeding difficulties. She received a tracheostomy to assist with breathing difficulties. She also had a second heart surgery at four months of age, followed by a 19-month stay in the PICU. Her recovery was complicated by viruses, pneumonia, lung collapses, ventilator challenges and too many other things to count.
Jennifer and Tyler’s family was a source of immense strength for them during this time. Just as important, however, was the support of their “Cardinal Glennon family,” especially Erin, their Footprints Care Coordinator, who connected them with resources for gas and other basic needs. “We live in Moscow Mills [Missouri], so getting back and forth from here is no small feat. We also have two older children and we hated not being home for the holidays. No one had to do that for us and it helped us to still celebrate Christmas, just in a different kind of way,” Jennifer says. Additionally, Tyler and Jennifer got married during that 19 months. “We were engaged before Layknn was born,” Tyler says. “Our relationship had grown so much with everything going on, that we were just ready to make it happen. There was never going to be an ‘easy’ or ‘perfect’ time, but the staff gave us the encouragement, confidence and space that we needed to do it. It meant so much to us and our other two children to be able to have our wedding, not knowing what our future would hold.” After 19 months in the PICU, Lakynn moved to the Transitional Care Unit (TCU), where plans were set in motion to transfer her to Ranken Jordan Pediatric Bridge Hospital. There, she would have more intensive therapy and both Jennifer and Tyler would have time to be more hands-on with Lakynn’s baths, tracheostomy care and whatever her daily care needs would be at home. She eventually went to Ranken Jordan, but came back to SSM Health Cardinal Glennon a few weeks later for some respiratory distress. Eventually, Lakynn’s condition improved and planning continued with the goal to get Lakynn home for the first time. This meant arrangements for home health, home equipment coordination, ventilator education with parents (and grandparents who would help care for her) and so much more. She was added to the Special Needs Tracking and Awareness Response System (STARS) program, and placed in their system prior to discharge.
On May 23, 2018, two weeks after her second birthday, Lakynn was finally discharged home.
She continues to make progress with her feedings, walking, crawling, eating and developmental milestones. She recently had a third open heart surgery, which resulted in improved oxygenation the lowering of her ventilator settings at home. She also returns to SSM Health Cardinal Glennon frequently for admissions and appointments with her multiple specialists, including Cardiothoracic Surgery, Cardiology, Otolaryngology, Audiology, Ophthalmology, Genetics, Clinical Nutrition, the Complex Care Team, and our Footprints Palliative Care Program.
Lakynn’s grandparents have utilized 911 and the STARS program once since Lakynn was discharged. Jennifer was so grateful that a system was already in place so that the first responders knew her daughter and it was not up to her mother to produce all of Lakynn’s history.
Looking forward, Jennifer and Tyler are hopeful for Lakynn’s future. “We just want her to experience the things that other children are able to experience,” says Jennifer. More immediately, Jennifer and Tyler are excitedly looking forward to their first holiday season at home with all three of their children. “We are so blessed and so excited looking ahead to Thanksgiving and Christmas. We know what it’s like to be in the hospital and not have that, and one day, we hope to be able to pay it forward to other families.”
When asked why people should consider donating to SSM Health Cardinal Glennon, Jennifer and Tyler share, “Because, Cardinal Glennon helps families like ours who need it and because it’s like a family here. It’s our home away from home, literally…and there are so many families that have much less than we do. Every little bit counts and makes a difference for families like ours and so many more.”