By 32 weeks of pregnancy, Lyra’s mom Kimberly, had already had a turbulent pregnancy complete with multiple hospital stays for preterm labor and a diagnosis of extremely severe ICP (intrahepatic cholestasis of pregnancy) – a serious condition that can lead to stillbirth. Lyra had already been diagnosed, in utero, with a heart arrythmia. On March 26, 2018, at one of her MFM specialist appointments, Kimberly told her doctor that something was wrong with Lyra’s heart and that she had been blacking out. Three days ago at her regular OB appointment, Kimberly was on the heart monitors and heard a galloping sound but was told it was nothing. Luckily Kimberly’s MFM, Dr. Ashley Parker, was an amazing practitioner who listened to her concerns and sure enough the monitor showed baby Lyra’s heart rate was over 280 bpm.
Dr. Parker made the decision that it was time to head to the OR for an emergency c-section to get baby Lyra out of there! And so, at 32 weeks Lyra was born weighing a little over 4 lbs. and was diagnosed with SVT (super-ventricular tachycardia) and whisked off to the NICU. SVT is a condition wherein the heart cannot regulate itself and has episodes of soaring BPMs.
Lyra spent 34 days in the NICU growing and getting her heart under control. During this time Kimberly and Scott (Lyra’s dad), had to juggle spending time with baby Lyra and still taking care of their other two children Calista (11) and James (5). Kimberly and Scott relied on friends, like their best friends Sydney and Christopher Schneider, and family to make it through that challenging time. Luckily, both Kimberly and Scott’s law firms were incredibly supportive. When Lyra was discharged home, Kimberly and Scott looked forward to life settling down a little.
Unfortunately, on September 10, 2018, 5 month old Lyra had an episode of SVT that once again sent her heartrate soaring up to over 280 bpm. Kimberly rushed Lyra to the ER without delay. While waiting in the waiting room for quite some time (and growing increasingly anxious!) a nurse who happened to be there waiting with her son came over asked what was going on. When Kimberly told her the baby was in SVT and that nurse immediately got the staff’s attention to get Lyra immediate help. And that was the first amazing person Lyra’s parents met on what would be the long road ahead.
The day, despite the ER’s best attempts, they could not lower Lyra’s heart rate. 2 hours passed, then 6, then 8. Imagine running a marathon at full tilt for that long – and that is what Lyra’s hear was doing. During this time Lyra’s cardiologist Dr. David Bush came over (despite it being past midnight) and was just as concerned for baby Lyra as mom and dad were. At hour 9 the decision was made to transport Lyra to Childrens’ Methodist Hospital in the event that Lyra needed to be put on life support.
For 19 hours, Lyra’s heart was over 220 bpm with no breaks. Kimberly and Scott were in a panic hoping that Lyra stayed stable and would not suffer a heart attack. Miraculously, Lyra always just stayed this side of stable. During this time Lyra was also diagnosed with WPW (another heart rhythm disorder).
Over the next weeks, Lyra would have long bouts of SVT that were uncontrollable with medication. Something more would need to be done. SVT and WPW are normally controlled with medications but that wasn’t working for Lyra. The other option was a procedure called an ablation, but this was a dangerous procedure for a baby Lyra’s age. So, the decision was made to try open heart surgery.
All seemed well and Lyra was released home, only to have to head back 24 hours later with yet another episode of SVT. At this time Lyra’s parents made the gut-wrenching decision to proceed with the ablation, even knowing the serious risks. Thankfully Dr. Bush was able to safely perform the ablation which worked and after 37 days Lyra was finally cleared to go home.
During those 37 days, Kimberly lived in the PICU sleeping on the fold out chair, working from a makeshift mobile office, and keeping her things and a small food stash in a tiny cupboard. Scott came daily and helped make sure the bigger two kids were ok. To say these were difficult days is an understatement. Kimberly and Scott were blessed with an INCREDIBLE outpouring of support. Family and friends sent food, changes of clothes, and came by to provide love and companionship. Colleagues and even former law school classmates that Kimberly and Scott hadn’t spoken to in years sent Uber Eats gift cards. MASO came together and also sent food and help.
Scott and Kimberly learned a lot in those days. But one of the biggest things they learned was how fortunate they were. They had good insurance, stable and supportive jobs, amazing families who lived close by, loyal friends, and a community even including strangers and old friends who pulled together to support them. But even with every advantage, it was still the hardest most difficult and financially draining time in their life.
After that experience, and Lyra’s last hurrah in December 2018 when she spent another 10 days in the PICU for RSV, Kimberly and Scott along with the ever-supportive best friends Sydney and Christopher Schneider decided to pay it forward and help other parents of children in the NICU and PICU, especially those without resources or family to help.
Today Lyra is almost 2 years old and doing well! Lyra’s family are eternally grateful that she made it and that everyone is together as a happy healthy family.
