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 an makes a difference for families like ours and so many more."