A Life Well Lived, A Legacy of Love
Written By Lauren Edwards
The Beginning
Collins Monroe Brown changed the world more in her few short years on earth than many of us can even hope to in an entire lifetime. Collins was our first child and was born January 27, 2019. At the 20-week anatomy scan, we were told that she had what was believed to be an isolated cleft lip and palate meaning that there didn’t appear to be any other related midline defects that may correlate with a diagnosis. Follow up genetic testing confirmed there was nothing known to be genetic at the time. We dove right into meeting with cleft surgeons and had a plan we felt good about heading into her arrival. Collins birth was uneventful, and we were over the moon to finally meet her. She was born healthy and happy and while in hindsight she most definitely physically resembled many of the babies in our HPE community, we were still blissfully unaware her condition was anything other than a cosmetic one.
Diagnosis
Around day 11 or 12, Collins became inconsolable and despite all efforts our intuition knew something was wrong. Out of an abundance of caution, our pediatrician admitted her for failure to thrive. I will never forget when the crass and extremely matter of fact neurologist gave us a taste of how awful physicians can be. She said “an MRI confirmed your daughter has semi-lobar holoprosencephaly. She should not have been born alive and has a less than 1% chance of making it to 1 month.” Silence. Shock. Disbelief. She had very little to offer other than suggesting that we call hospice and palliative care. For a moment, we lost all hope that we would leave that hospital with our daughter.
There was a very pivotal moment in receiving that news. My husband and I could sink under what felt like an insurmountable hurdle and accept their suggestion of only providing comfort care or we could rise to the occasion and start researching and learning everything we needed to know to best advocate for our daughter. Thank God we were blessed to meet the palliative care team at our local children’s hospital who quickly showed us that there is a wonderful side to the medical community that can walk alongside you and provide a realistic view of what we can expect while also treating us and Collins with the dignity and respect we deserve.
Families for HoPE
There was very little information shared by the neurology team that gave us any idea of what we could expect other than the doom and gloom. So, I started using every waking moment (which was a lot because there was very little sleep happening) researching everything there is to know about holoprosencephaly. Google was also very little help. I knew if I was going to have an idea of what our journey may look like, I needed to find other families. This is when I found the Families for HoPE Facebook page and immediately added any of my close family members who had a Facebook page to the group. We learned more from constantly searching and scrolling in this group than we could ever have hoped to learn from our doctors or the internet. We also found a local group for parents of medically complex and fragile children which was helpful for navigating our options in our state. We subsequently joined Facebook communities for every single diagnosis Collins received over the years and those communities gave us more knowledge than any physician, any medical degree, any book could have ever hoped to provide.
Thriving
Thrive verb: to grow vigorously, to flourish.
Thrive would have never been a word used by the neurologist that gave us the diagnosis of SLHPE but thrive is just what Collins did. She was a bright light in what felt like near darkness at times, showing all of us what true work and will to live looked like. We were blessed to find a local program called the Centers for Exceptional Children who ran a special needs infant and toddler program which allows medically complex and special needs children and usually their typical siblings to attend daycare and preschool together. This program would be the answer to our prayers. They always had a nurse available and PT/OT and speech on site for daily therapy. This allowed my husband and I to consider the possibility that we could remain employed which is so often not an option afforded to caregivers of medically complex children. Collins always worked so hard in therapy often proving everyone wrong in what she was capable of. She went from rolling, to assisted sitting, to standing in her stander, to fully interacting with her peers, and always smiling. She even started learning how to communicate with switch technology and love practicing with her switch activated toys.
The Journey
Our journey was not without health barriers, more scary diagnoses, and tears. We had to deal with seizures, diabetes insipidus, respiratory challenges that ultimately resulted in a tracheostomy, and neurological storming. Throughout all these challenges, Collins still thrived. I remember talking to her cardiologist recently who shared how amazing it was to see photos of Collins experiencing life. In the hospital, physicians are often only privy to our children at their worst, when they are sick or struggling. They often forget the perspective of the family who gets to enjoy these kiddos at their best. They forget to keep in perspective what we are really fighting for. We fight for the good days and fight thru the bad days. Collins fought hard and really enjoyed life for the far too short 3 years that we were blessed to have her.
In January 2022, after staying protected for 2 years, Covid hit our household. We did everything within our power to keep Collins safe, but she unfortunately tested positive. We began all the respiratory supports we had available to us, and she did really well until day 11 when we think she just got tired. She was no longer able to maintain her oxygen saturations and we were admitted for ventilator support. It very quickly became apparent that this illness would be unlike any we had ever faced before, and we could tell in the voices of some physicians very close to our family that the outlook didn’t look great. My husband and I have always had difficult conversations from the beginning and my biggest piece of advice to parents facing a difficult diagnosis is to have these conversations when things are good, and your child is healthy. Having clear and levelheaded conversations when things are hard is extremely difficult. For us, we knew we never wanted to make healthcare decisions for Collins based on our needs or desires for her length of life but rather solely based on her quality of life. Her Covid journey very quickly became a conversation of what her overall quality of life would be it and sadly became clear that she was done fighting. Collins was unresponsive for most of that hospital stay but I will never forget a moment in all the chaos where she opened her eyes and smiled at us. People always say their loved ones had a moment of clarity just before passing where they have truly felt like they were saying “I’m ok. It’s ok to let me go”. At the time we felt like her smile was a sign that she would come out of this, but now, after everything, I have no doubt she left us with one last signature smile. Collins Monroe passed away January 26, 2022, one day before her third birthday.
Legacy
Collins impact on those around her was palpable. She changed me, our family, helped clarify our values, strengthen our faith and relationship with God, and changed how we raise her siblings. But all of those were a given. The impact she had on our friends and their children is something I did not expect and something that has brought us continued joy even after her passing. The first time one of her sweet friends asked if we could roll Collins over to be in her birthday picture brought tears of joy to our eyes. They knew she was different, and it didn’t matter, they loved her and included her anyway still get together every year and celebrate her birthday with our village. Lastly, the impact she and our family had on our local medical community can be felt to this day. We were part of a local program that allowed residents to visit us in our home and learn what a day in the life of a family like ours looked like. These residents had so many questions, good questions, and I believe they got answers that they will take well into their medical career. We were also one of the first families our children’s hospital worked with to help get home before Collins passed. Without their willingness to help, generous donations both of their services and time, and coordination with hospice many of our family members would not have been able to say their goodbyes to Collins due to COVID protocols. Additionally, our family made a lasting impact on the doctors who got to know us. Our quest for always putting Collins first, always researching and advocating for treatments, equipment, and medications to improve her quality of life, while simultaneously recognizing how challenging their profession is. We also spent a large chunk of time educating the medical community that these kids are not just a burden to society or to the healthcare system and can thrive and learn and grow all in their own ways. We would not have changed Collins for the world, but we certainly would have changed the world for her.
And I’ll leave you with one of my favorite quotes shared with me after Collins passing: “be the things you loved most about the people who are gone”. We love you Collins Monroe, forever and always to the moon and back.
Please consider a donation to Families for HoPE today to ensure that Lauren and other parents receiving a diagnosis of HPE for their child will find the support they seek.
Share the HoPE in Holoprosecephaly
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Celebrating HPE Awareness Week, Sharing Our Families’ Stories
Posted: March 26, 2024 by lyndot71
A Life Well Lived, A Legacy of Love
Written By Lauren Edwards
Collins Monroe Brown changed the world more in her few short years on earth than many of us can even hope to in an entire lifetime. Collins was our first child and was born January 27, 2019. At the 20-week anatomy scan, we were told that she had what was believed to be an isolated cleft lip and palate meaning that there didn’t appear to be any other related midline defects that may correlate with a diagnosis. Follow up genetic testing confirmed there was nothing known to be genetic at the time. We dove right into meeting with cleft surgeons and had a plan we felt good about heading into her arrival. Collins birth was uneventful, and we were over the moon to finally meet her. She was born healthy and happy and while in hindsight she most definitely physically resembled many of the babies in our HPE community, we were still blissfully unaware her condition was anything other than a cosmetic one.
Diagnosis
Around day 11 or 12, Collins became inconsolable and despite all efforts our intuition knew something was wrong. Out of an abundance of caution, our pediatrician admitted her for failure to thrive. I will never forget when the crass and extremely matter of fact neurologist gave us a taste of how awful physicians can be. She said “an MRI confirmed your daughter has semi-lobar holoprosencephaly. She should not have been born alive and has a less than 1% chance of making it to 1 month.” Silence. Shock. Disbelief. She had very little to offer other than suggesting that we call hospice and palliative care. For a moment, we lost all hope that we would leave that hospital with our daughter.
There was a very pivotal moment in receiving that news. My husband and I could sink under what felt like an insurmountable hurdle and accept their suggestion of only providing comfort care or we could rise to the occasion and start researching and learning everything we needed to know to best advocate for our daughter. Thank God we were blessed to meet the palliative care team at our local children’s hospital who quickly showed us that there is a wonderful side to the medical community that can walk alongside you and provide a realistic view of what we can expect while also treating us and Collins with the dignity and respect we deserve.
Families for HoPE
There was very little information shared by the neurology team that gave us any idea of what we could expect other than the doom and gloom. So, I started using every waking moment (which was a lot because there was very little sleep happening) researching everything there is to know about holoprosencephaly. Google was also very little help. I knew if I was going to have an idea of what our journey may look like, I needed to find other families. This is when I found the Families for HoPE Facebook page and immediately added any of my close family members who had a Facebook page to the group. We learned more from constantly searching and scrolling in this group than we could ever have hoped to learn from our doctors or the internet. We also found a local group for parents of medically complex and fragile children which was helpful for navigating our options in our state. We subsequently joined Facebook communities for every single diagnosis Collins received over the years and those communities gave us more knowledge than any physician, any medical degree, any book could have ever hoped to provide.
Thriving
Thrive verb: to grow vigorously, to flourish.
Thrive would have never been a word used by the neurologist that gave us the diagnosis of SLHPE but thrive is just what Collins did. She was a bright light in what felt like near darkness at times, showing all of us what true work and will to live looked like. We were blessed to find a local program called the Centers for Exceptional Children who ran a special needs infant and toddler program which allows medically complex and special needs children and usually their typical siblings to attend daycare and preschool together. This program would be the answer to our prayers. They always had a nurse available and PT/OT and speech on site for daily therapy. This allowed my husband and I to consider the possibility that we could remain employed which is so often not an option afforded to caregivers of medically complex children. Collins always worked so hard in therapy often proving everyone wrong in what she was capable of. She went from rolling, to assisted sitting, to standing in her stander, to fully interacting with her peers, and always smiling. She even started learning how to communicate with switch technology and love practicing with her switch activated toys.
The Journey
Our journey was not without health barriers, more scary diagnoses, and tears. We had to deal with seizures, diabetes insipidus, respiratory challenges that ultimately resulted in a tracheostomy, and neurological storming. Throughout all these challenges, Collins still thrived. I remember talking to her cardiologist recently who shared how amazing it was to see photos of Collins experiencing life. In the hospital, physicians are often only privy to our children at their worst, when they are sick or struggling. They often forget the perspective of the family who gets to enjoy these kiddos at their best. They forget to keep in perspective what we are really fighting for. We fight for the good days and fight thru the bad days. Collins fought hard and really enjoyed life for the far too short 3 years that we were blessed to have her.
In January 2022, after staying protected for 2 years, Covid hit our household. We did everything within our power to keep Collins safe, but she unfortunately tested positive. We began all the respiratory supports we had available to us, and she did really well until day 11 when we think she just got tired. She was no longer able to maintain her oxygen saturations and we were admitted for ventilator support. It very quickly became apparent that this illness would be unlike any we had ever faced before, and we could tell in the voices of some physicians very close to our family that the outlook didn’t look great. My husband and I have always had difficult conversations from the beginning and my biggest piece of advice to parents facing a difficult diagnosis is to have these conversations when things are good, and your child is healthy. Having clear and levelheaded conversations when things are hard is extremely difficult. For us, we knew we never wanted to make healthcare decisions for Collins based on our needs or desires for her length of life but rather solely based on her quality of life. Her Covid journey very quickly became a conversation of what her overall quality of life would be it and sadly became clear that she was done fighting. Collins was unresponsive for most of that hospital stay but I will never forget a moment in all the chaos where she opened her eyes and smiled at us. People always say their loved ones had a moment of clarity just before passing where they have truly felt like they were saying “I’m ok. It’s ok to let me go”. At the time we felt like her smile was a sign that she would come out of this, but now, after everything, I have no doubt she left us with one last signature smile. Collins Monroe passed away January 26, 2022, one day before her third birthday.
Legacy
Collins impact on those around her was palpable. She changed me, our family, helped clarify our values, strengthen our faith and relationship with God, and changed how we raise her siblings. But all of those were a given. The impact she had on our friends and their children is something I did not expect and something that has brought us continued joy even after her passing. The first time one of her sweet friends asked if we could roll Collins over to be in her birthday picture brought tears of joy to our eyes. They knew she was different, and it didn’t matter, they loved her and included her anyway still get together every year and celebrate her birthday with our village. Lastly, the impact she and our family had on our local medical community can be felt to this day. We were part of a local program that allowed residents to visit us in our home and learn what a day in the life of a family like ours looked like. These residents had so many questions, good questions, and I believe they got answers that they will take well into their medical career. We were also one of the first families our children’s hospital worked with to help get home before Collins passed. Without their willingness to help, generous donations both of their services and time, and coordination with hospice many of our family members would not have been able to say their goodbyes to Collins due to COVID protocols. Additionally, our family made a lasting impact on the doctors who got to know us. Our quest for always putting Collins first, always researching and advocating for treatments, equipment, and medications to improve her quality of life, while simultaneously recognizing how challenging their profession is. We also spent a large chunk of time educating the medical community that these kids are not just a burden to society or to the healthcare system and can thrive and learn and grow all in their own ways. We would not have changed Collins for the world, but we certainly would have changed the world for her.
And I’ll leave you with one of my favorite quotes shared with me after Collins passing: “be the things you loved most about the people who are gone”. We love you Collins Monroe, forever and always to the moon and back.
Please consider a donation to Families for HoPE today to ensure that Lauren and other parents receiving a diagnosis of HPE for their child will find the support they seek.
Share the HoPE in Holoprosecephaly
Like this:
Category: Child of HoPE, Guest Authors, Holoprosencephaly Awareness Week, Inspiration Tags: #hpeawareness, 2024 HPE Awareness Week, collins, collins brown, families for hope, HoPE