I had a great opportunity to share Corinne's story with a local NWA magazine called Peeaboo, below is the publication.
Go Where We Can Shine...Corinne's Story
By Emily Moll
My second child, Corinne Sophia Moll, was born on July 12, 2011 in Rogers, Arkansas. I had a great pregnancy, with no complications and great medical care. The minute my daughter was born my life changed forever. Corinne was born not breathing and her little heart not beating.
Within hours, she had to be helicoptered to Arkansas Children’s Hospital in Little Rock. Corinne’s immediate medical concerns were seizures, low muscle tone (hypotonia), a “hiccupy” method of breathing, and some distinctive facial features typically associated with chromosomal or genetic disorders. Within the first few days, her doctors ruled out chromosomal issues that typically lead to a very short life expectancy. Thinking the worst was behind us we celebrated that night with champagne.
However, as the days progressed, our hopes of a healthy child began slipping away with each discovery of a new medical issue. Her muscle tone was decreasing, her hiccupy way of breathing lead us to find three holes in her heart, and MRI’s of her brain were not promising. At this point we were waiting for genetic results to come back, which would give definitive answers to her condition. As we waited the doctors’ goal was to keep Corinne stable; breathing on her own without a ventilator and her heart failure under control. If Corinne was put on a ventilator there were concerns she would never be strong enough to breathe without it and if her heart failure continued to worsen we would have to start considering open heart surgery. Survival of a heart surgery was slim, and if Corinne’s condition was terminal an extremely invasive heart surgery with long healing time was personally not an option for us.
On July 19, one week after Corinne was born, we were delivered some of the worst news we had received yet. Corinne had her third MRI, and this one showed severe abnormalities of her brain. My world fell out from underneath me. Realization that my daughter would not live a “normal, healthy life” hit, and hit hard. With all of Corinne’s symptoms and this third MRI it lead doctors to believe that she had an extremely rare genetic disorder called Zellweger Syndrome, but we would have to wait another week for the genetic results.
At this point Corinne was not able to breathe on her own and was put on a ventilator, she also was not considered a successful candidate for heart surgery. My husband, Ryan, and I started to make plans to temporarily move to Little Rock. Ryan would commute back and forth between NWA and Little Rock for work, nearly a four-hour drive. We rented a furnished apartment and hired a babysitting service to stay with our 2-year-old son Evan while I would be at the hospital with Corinne. With this plan, I would be alone most of the week and Ryan would come to Little Rock for long weekends. I was very excited to get Evan to Little Rock because I missed him so much! As much as I needed to be there for Corinne, I also desperately needed to be a mother to Evan. But, before the move was complete there was yet another change in our forever changed world.
Exactly two weeks after Corinne was born we were given the final diagnosis. She had Zellweger Syndrome, a terminal disorder. There were no cures or treatments. Average life expectancy was 6 months, but, due to Corinne’s heart failure, our time with her would be much shorter. Exactly how short, they could not predict. At this point there was nothing medically that could be done for Corinne and her next health care options was palliative care, which is similar to hospice. We asked the doctors something that had been on our minds for a while: Could Corinne get the care she needed closer to our home? The answer was yes, and we were ecstatic! Within 24 hours she was helicoptered back to Washington Regional in Fayetteville, AR.
The change was all so bittersweet. It was great to be back in NWA, of course. We were in familiar territory, Ryan wouldn’t have to commute and I would have more care options for Evan. Being at Children’s our only daily responsibility was Corinne, but now, back home, routine responsibility became a reality. I was feeling a lot of anxiety being home and was having a hard time adjusting to the change. Then, there was the difference of being at a children’s hospital where sick children seemed “normal;” little ones walking the halls pulling their IV’s behind them, the constant beep of machines and the rush of doctors and nurses feet seemed normal. Now at Washington Regional, Corinne was the only NICU patient and needed full time care so her bed was set up in the regular nursery area, next to the healthy babies that would soon be going home. Taking our baby home would not be in the future for us and that’s when it hit me… this was not “normal!” My child was dying and there was nothing that could be done! I remember running out of the hospital, crying hysterically, calling my sister on the phone. She was a doctor and mother who had guided us through so many hard days and decisions. I was questioning everything we had done up to this point. Did we do enough? Were we making the right decisions? Why was this happening to us? Then, one of the hardest, most painful realizations I’ve ever had... How do I plan a funeral for my daughter?
After a week back in NWA and a meeting with Corinne’s neonatologist, we learned that there was nothing more that could be done for her. She was, at this point, the most stable she had been since she was born. If Corinne was ever going to successfully breathe off of a ventilator, now was her chance, plus there were risks, like pneumonia, the longer she stayed ventilated. So, we made the decision to take her off the ventilator, her life support. We asked the doctors how long they thought we would have with her, they thought a couple of hours but there were concerns it would be just minutes.
Before we took her off the ventilator, we called our families and welcomed our friends to the hospital to meet Corinne for the first time. Five days later, we made the hardest walk up to the hospital yet. The doctors were all very patient as we loved on Corinne and said our goodbyes. Then it happened, we turned off all of the machines and took out her ventilator and for us a miracle happened, our daughter kept breathing on her own!
Corinne lived for 59 hours after her ventilator was removed. We were able to really hold her for the first time. It was all so bittersweet. During those next two and a half days, I was constantly watching her breathing, counting her heartbeats and respiratory rate, and always holding my breath for the decline. Since we didn’t know how long we had with Corinne, for the first 24 hours it was just Ryan and I with her. On the second day, family and close friends came up to see her. Then, I experienced the worst thing any mother should have to, after 29 days of life, I watched my daughter take her last breathes.
Zellweger Syndrome is a recessive genetic disorder that affects normal metabolic function, along with organ and brain development. It is extremely rare, and the mass population has a .007% of having a child born with ZS. Since my husband and I both carry the recessive gene, we have a 1 in 4 chance of having a child born with ZS. We are thankful every day that Evan is healthy and was not affected. Many people ask why we didn’t know about this when I was pregnant, and if there was anything they could have done. The answer, unfortunately, is no. The disorder is so rare there was no reason for us to think we were carriers. I am so thankful for all the medical care that I had during my pregnancy and after Corinne was born. I have no doubt in my mind that Corinne had the best life possible. The doctors at Mercy, Arkansas Children’s, and Washington Regional truly are amazing! I would list the names of all the amazing people in the medical community we met along the way, but it would fill up an entire article in itself.
Corinne offered me one of the greatest loves of my life and the greatest heartbreak. She was born into my arms and died in them. Losing a child, I think, is the greatest loss a person can experience. I know a lot of people that experience tragedy say that they don’t want those things to define them,
and I understand that. The loss of my daughter will define so many things in my life that it almost does define me and I am more than okay with that. I know that Corinne is in an amazing place, feeling the love of our heavenly Father, but the ache I feel for her is almost a physical pain. I try to cherish every moment I have here on earth, but I lull myself to sleep at night with thoughts of my family reunited in heaven. When that day comes, she will be so happy to meet her new baby sister. That’s right, we are also happy to announce we welcomed our third child, Harper Jane Moll, into the world on February 5, 2013! That is another amazing medical journey we have been on... but I will leave that for another story.
Go Where We Can Shine...Corinne's Story
By Emily Moll
My second child, Corinne Sophia Moll, was born on July 12, 2011 in Rogers, Arkansas. I had a great pregnancy, with no complications and great medical care. The minute my daughter was born my life changed forever. Corinne was born not breathing and her little heart not beating.
Within hours, she had to be helicoptered to Arkansas Children’s Hospital in Little Rock. Corinne’s immediate medical concerns were seizures, low muscle tone (hypotonia), a “hiccupy” method of breathing, and some distinctive facial features typically associated with chromosomal or genetic disorders. Within the first few days, her doctors ruled out chromosomal issues that typically lead to a very short life expectancy. Thinking the worst was behind us we celebrated that night with champagne.
However, as the days progressed, our hopes of a healthy child began slipping away with each discovery of a new medical issue. Her muscle tone was decreasing, her hiccupy way of breathing lead us to find three holes in her heart, and MRI’s of her brain were not promising. At this point we were waiting for genetic results to come back, which would give definitive answers to her condition. As we waited the doctors’ goal was to keep Corinne stable; breathing on her own without a ventilator and her heart failure under control. If Corinne was put on a ventilator there were concerns she would never be strong enough to breathe without it and if her heart failure continued to worsen we would have to start considering open heart surgery. Survival of a heart surgery was slim, and if Corinne’s condition was terminal an extremely invasive heart surgery with long healing time was personally not an option for us.
On July 19, one week after Corinne was born, we were delivered some of the worst news we had received yet. Corinne had her third MRI, and this one showed severe abnormalities of her brain. My world fell out from underneath me. Realization that my daughter would not live a “normal, healthy life” hit, and hit hard. With all of Corinne’s symptoms and this third MRI it lead doctors to believe that she had an extremely rare genetic disorder called Zellweger Syndrome, but we would have to wait another week for the genetic results.
At this point Corinne was not able to breathe on her own and was put on a ventilator, she also was not considered a successful candidate for heart surgery. My husband, Ryan, and I started to make plans to temporarily move to Little Rock. Ryan would commute back and forth between NWA and Little Rock for work, nearly a four-hour drive. We rented a furnished apartment and hired a babysitting service to stay with our 2-year-old son Evan while I would be at the hospital with Corinne. With this plan, I would be alone most of the week and Ryan would come to Little Rock for long weekends. I was very excited to get Evan to Little Rock because I missed him so much! As much as I needed to be there for Corinne, I also desperately needed to be a mother to Evan. But, before the move was complete there was yet another change in our forever changed world.
Exactly two weeks after Corinne was born we were given the final diagnosis. She had Zellweger Syndrome, a terminal disorder. There were no cures or treatments. Average life expectancy was 6 months, but, due to Corinne’s heart failure, our time with her would be much shorter. Exactly how short, they could not predict. At this point there was nothing medically that could be done for Corinne and her next health care options was palliative care, which is similar to hospice. We asked the doctors something that had been on our minds for a while: Could Corinne get the care she needed closer to our home? The answer was yes, and we were ecstatic! Within 24 hours she was helicoptered back to Washington Regional in Fayetteville, AR.
The change was all so bittersweet. It was great to be back in NWA, of course. We were in familiar territory, Ryan wouldn’t have to commute and I would have more care options for Evan. Being at Children’s our only daily responsibility was Corinne, but now, back home, routine responsibility became a reality. I was feeling a lot of anxiety being home and was having a hard time adjusting to the change. Then, there was the difference of being at a children’s hospital where sick children seemed “normal;” little ones walking the halls pulling their IV’s behind them, the constant beep of machines and the rush of doctors and nurses feet seemed normal. Now at Washington Regional, Corinne was the only NICU patient and needed full time care so her bed was set up in the regular nursery area, next to the healthy babies that would soon be going home. Taking our baby home would not be in the future for us and that’s when it hit me… this was not “normal!” My child was dying and there was nothing that could be done! I remember running out of the hospital, crying hysterically, calling my sister on the phone. She was a doctor and mother who had guided us through so many hard days and decisions. I was questioning everything we had done up to this point. Did we do enough? Were we making the right decisions? Why was this happening to us? Then, one of the hardest, most painful realizations I’ve ever had... How do I plan a funeral for my daughter?
After a week back in NWA and a meeting with Corinne’s neonatologist, we learned that there was nothing more that could be done for her. She was, at this point, the most stable she had been since she was born. If Corinne was ever going to successfully breathe off of a ventilator, now was her chance, plus there were risks, like pneumonia, the longer she stayed ventilated. So, we made the decision to take her off the ventilator, her life support. We asked the doctors how long they thought we would have with her, they thought a couple of hours but there were concerns it would be just minutes.
Before we took her off the ventilator, we called our families and welcomed our friends to the hospital to meet Corinne for the first time. Five days later, we made the hardest walk up to the hospital yet. The doctors were all very patient as we loved on Corinne and said our goodbyes. Then it happened, we turned off all of the machines and took out her ventilator and for us a miracle happened, our daughter kept breathing on her own!
Corinne lived for 59 hours after her ventilator was removed. We were able to really hold her for the first time. It was all so bittersweet. During those next two and a half days, I was constantly watching her breathing, counting her heartbeats and respiratory rate, and always holding my breath for the decline. Since we didn’t know how long we had with Corinne, for the first 24 hours it was just Ryan and I with her. On the second day, family and close friends came up to see her. Then, I experienced the worst thing any mother should have to, after 29 days of life, I watched my daughter take her last breathes.
Zellweger Syndrome is a recessive genetic disorder that affects normal metabolic function, along with organ and brain development. It is extremely rare, and the mass population has a .007% of having a child born with ZS. Since my husband and I both carry the recessive gene, we have a 1 in 4 chance of having a child born with ZS. We are thankful every day that Evan is healthy and was not affected. Many people ask why we didn’t know about this when I was pregnant, and if there was anything they could have done. The answer, unfortunately, is no. The disorder is so rare there was no reason for us to think we were carriers. I am so thankful for all the medical care that I had during my pregnancy and after Corinne was born. I have no doubt in my mind that Corinne had the best life possible. The doctors at Mercy, Arkansas Children’s, and Washington Regional truly are amazing! I would list the names of all the amazing people in the medical community we met along the way, but it would fill up an entire article in itself.
Corinne offered me one of the greatest loves of my life and the greatest heartbreak. She was born into my arms and died in them. Losing a child, I think, is the greatest loss a person can experience. I know a lot of people that experience tragedy say that they don’t want those things to define them,
and I understand that. The loss of my daughter will define so many things in my life that it almost does define me and I am more than okay with that. I know that Corinne is in an amazing place, feeling the love of our heavenly Father, but the ache I feel for her is almost a physical pain. I try to cherish every moment I have here on earth, but I lull myself to sleep at night with thoughts of my family reunited in heaven. When that day comes, she will be so happy to meet her new baby sister. That’s right, we are also happy to announce we welcomed our third child, Harper Jane Moll, into the world on February 5, 2013! That is another amazing medical journey we have been on... but I will leave that for another story.
