Reese's Story
Reese Barbara Gladfelter entered our lives on April 19, 2011 at 10:47 a.m. weighing just 5lbs. Reese was born a fighter, she was delivered via repeat c-section 3 weeks early because of multiple pregnancy complications including decreased AFI, severe IUGR and maternal Orthinine Transcarbamylase Deficiency. She was welcomed with love by her entire family especially Mommy, Daddy and Big Sister Hope.
The first few weeks were spent getting used to our new family. We celebrated Reese's first Easter. We took a family vacation to Ocean City, Maryland. We spent a lot of time with our families. It was a wonderful time in our lives; however it was definitely an adjustment having two children. My Postpartum Depression was treated and under control and I was feeling myself. We were just beginning to feel like we were in our "new normal".
I was not back to work 3 weeks when things all began to change. Reese went to the pediatrician for her 4 month well visit on August 17, 2011 and everything was completely fine. Reese was totally herself, no fever, no symptoms and no one dreamed that 2 days later we would be in the Emergency Room watching our baby fight for her life.
On Thursday August 18, 2011 Reese was slightly irritable and had a low grade fever. Friday August 19, 2011 I went to work at Bryn Mawr Hospital, where I work as maternal newborn nurse. Reese stayed home with her father and her big sister. I called home mid-afternoon as I always do to check in; it was then that I discovered that she was barely taking her formula, she had slept most of the day but the few times she was awake she was much more irritable than usual and her fever had risen to 104 degrees rectally. She was unresponsive to the antipyretics we were using to control the fever. I don't know if it was the nurse in me or the mother in me but I immediately panicked. I knew something was wrong. We called our pediatrician who wanted to see us immediately especially since she was still so young. Less than 1 hour later I got the phone call from both my pediatrician and my husband that told me exactly what I feared, Reese was on her way to the Emergency Room at Bryn Mawr Hospital.
4 months, to the day, after her birth Reese was back in the hospital. Her father and I sat by her side and held her hand as the physicians and nurses examined her and ran all sorts of blood work. Was this just a run of the mill virus that she was having trouble fighting due to her young age, or something much more serious? We had to watch our baby girl undergo a Lumbar Puncture, an extremely painful procedure to rule out Meningitis and Sepsis. After 7 heartbreaking hours in the Emergency Room we were sent home. All Reese's blood work and testing came back indicating that it was just a virus and we were discharged home and told to see our pediatrician that following Monday.
The following day Reese was still not eating and she still had a fever but we were just waiting for the virus to run it's course and treating her symptoms. Later that day I recieved a phone call from the attending physician that was on call the previous evening in the ER; I was informed that the blood cultures from the night before had come back positive. It was one of the worst moments of my life, one I will never forget. We were back at the hospital within half an hour. Positive blood cultures usually indicate Sepsis, a severe illness in which the blood stream is overtaken by growth of bacteria stemming from an infection. Sepsis can advance quickly and is often fatal, especially in infants.
Reese was admitted and quickly decompensating. She had developed a rash over most of her body but significantly worse on her hands, feet and groin. She still had a fever up to 104 degrees rectally. She was not eating. She was extremely irritable and the area around her eyes was beginning to become reddened and swollen. The medical staff had been doing all sorts of bloodwork and testing on Reese to rule out any other diagnoses, in case it was not sepsis, they were not convinced. Reese had to undergo a second lumbar puncture and more blood cultures. Numerous labs were drawn daily and many were even sent to Children's Hospital of Philadelphia.
Everything was coming back negative but my husband and I knew there had to be something wrong, this was not our baby. I even had the physicians draw genetics studies and send them to Children's Hospital Of Philadelphia; I have an extremely rare metabolic disorder called Orthinine Transcarbamylase Defieciency that can be genetic, so when I was pregnant with both of my girls I had prenatal testing that showed neithier Hope nor Reese were affected with this order. This prenatal testing I had done is only 99% accurate so of course now that our baby was sick and we could not find anything wrong that 1% chance was too much for me to handle, I had to know for sure. Reese's genetic testing came back negative.
When everything came back negative, the physicians then started to feel it was probably just a regular run of the mill virus that her immune system was just having trouble fighting for some reason. Unfortunately, the testing came back stating that it was not a regular virus, so it was most definitely something more.
It was only then that Dr. Jared Caruso suggested that it could be Kawasaki Disease. We were relieved that someone had some kind of idea as to what it could be. He went on to explain that there is no real test for this disease. The only way it is diagnosed is by ruling everything else out and visualizing coronary aneurysms on a cardiac echo. He explained that to get a true diagnosis you must visualize cardiac damage and by then the damage is done. Any cardiac damage caused by this awful disease is permanent.
On Monday August 22, 2011 Reese had an EKG and a cardiac Echo to look for coronary aneurysms or any other cardiac issues. We were extremely lucky Reese had no cardiac damage; however the cardiologist assigned to her case concurred with Dr. Caruso's findings. He recommended a blood transfusion of IVIG.
Reese recieved her transfusion of IVIG later that afternoon. We were warned that many children do not respond to the first transfusion and that she might need numerous transfusions. We were also warned that this treatment is often not well tolerated. We were so blessed, not only did Reese tolerate the IVIG fairly well but she only needed one transfusion. Tuesday August 23, 2011; less than 18 hours after her IVIG was finished Reese was discharged home on anti-coagulant therapy with a follow up appointment at the pediatrician and cardiologist.
Reese's illness was an extremely stresssful time for the entire family. I was suffering from postpartum depression and I really struggled through her illness. My husband was an immense support and really stepped up to the plate; even though I know he himself was terrified as well. I never fully understood how much Reese's illness affected our older daughter Hope until 5 months later. We went for Reese's 9 month well visit but the pediatrician was delayed at coming into our room. Finally, she came in to apologize for the delay and explained that they had a patient that was very sick and needed to go to the hospital via ambulance. She explained the ambulance was on the way and then she would be in to see us. When Hope heard this she immediately started sobbing. She told me, "Mommy I don't want the ambulance to come take Reese to the hospital." It was at that moment I realized just how much this whole ordeal affected her as well.
Reese is currently a happy, healthy ten month old (as of 2/19/2011). Since her IVIG treatment she is a totally different baby. She is such a pleasant happy baby. She barely ever cries. She loves to blow raspberries and babble. She adores her big sister and follows her all around the house. She is always giggling. She loves to sing songs especially Itsy Bitsy Spider, Twinkle Twinkle, and Pat-a-Cake. She has the cutest little "army" crawl. She loves bouncing and dancing all around, she is trying so hard to walk unassisted. Her favorite new activity is is clapping. She is learning something new everyday. She is developmentally appropriate and totally healthy to date. She has been following up with cardiologists periodically and it looks as if we caught this disease in time and she has no lasting cardiac damage. She will, however, continue to be followed by cardiology. We are very blessed. Everyday we thank all the physicians and nurses at Bryn Mawr hospital, all the blood donors that gave blood to save my daughter's life, and most importantly God.
Our sweet baby
Reese Barbara Gladfelter
4 months old