Mother of 3 struggles with Brain Malformation
Donation protected
Most stories begin at well, the beginning. MY story is slightly more complicated. I'm going to begin where the struggles seemingly started and then I'll go back and explain what I learned of my past having gone through it.
First off, in early 2018 I was in my 3rd trimester of my 2nd pregnancy. I was caring for my son Mullen, who was 4 years old at the time. We lived on the coast of Texas, and my husband Daniel was working full time to support our family on his income alone as an automotive technician. As I neared my due date (mid-March) I began having complications with pre-term labor. One day while preparing a green smoothie in my kitchen, I suddenly dropped to the kitchen floor, in a lifeless pile. I was 38 weeks pregnant and in the past few weeks had been hospitalized multiple times with dehydration and contractions that were very hard to control. My husband gathered me off the floor (he had been in the other room and ran to me as soon as he heard the fall) We decided together once everything calmed that we would get Mullen to bed that night and then get me up to the hospital, knowing they would end up wanting to deliver my baby since i had already dilated quite a bit prior to this happening.
My mother came over and stayed with Mullen, and I headed to the hospital in order to be monitored. After being monitored overnight, the decision came to deliver this baby since it was putting strain on my heart. We prepped for surgery, I'm lying in the operating room and suddenly an enormous anxiety covers my entire body and I tell them that something is wrong. They respond to me that they are "working on it" but apparently my blood pressure was dropping dramatically and there was fear in the air. My husband was rushed into the room and stood by my side not even aware he had almost lost me just moments prior! There was a successful delivery once the anesthesiologist adjusted everything accordingly so that I was once again stabilized.
My hospital stay was short and despite my horrible headache, I was sent home after 36 hours post-op. My parents had taken Mullen to their home (7 hours away from us, and the first time EVER i'd been away from my little boy) in order to allow him space to have fun while mommy healed and and adjusted to the new baby. One month after giving birth to Kasher, Mullen returned home and all seemed to be going well. About two weeks later, things dramatically turned for the worst.
I was nursing Kasher while sitting on our couch watching Mullen draw a picture at his craft table and eat a snack. Suddenly the urge to vomit hit me with enormous force. I placed Kasher in his Snuggle Me (a cozy bed type product for babies) and ran to the restroom. When I returned to the couch and placed my baby back on my breast, my body began to grow limp involuntarily. With what I had left in me, I placed him back in the Snuggle Me and collapsed. My body began shaking uncontrollably and I blacked out. When I woke my husband was holding me and Mullen was staring at me with widened eyes. This was the first of MANY episodes that were completely puzzling to us. As the days grew on, my symptoms escalated and before we knew it I was becoming less and less capable of being the involved mother I had always felt the most pride for being.
My husband chose to quit his job and move us back to Colorado where we had spent the past two years prior to moving back to Texas in order to be closer to extended family for the baby. This wasn't easy. The heat in Texas was exacerbating my symptoms and all we had was a 1991 Toyota 4Runner that didn't cool very well. We had researched my symptoms and been in touch with specialists trying to find answers. It was our last ditch effort and quite a risky one. So with NO support or help from my family, we began our trek across Texas to Colorado. The entire trip was terrifying and we were both quietly trying to deal with the idea that i was unlikely to live much longer.
There was seizure-like activity, syncope, heart palpitations, temporary memory loss, migraines, dystonia all over my body, hypoglycemic attacks, among many other horrid symptoms. It always hit without much warning, and I could never be alone anymore. It just wasn't safe. Somehow we made it to north Colorado and thankfully had the ability to stay with a friend while we balanced parenting with doctor visits. It took all of our savings to float through the summer of 2018.
After our first visit to the hospital, we were given answers. They seemed like a blessing because we had been through so much, but quickly turned worrisome because of the gravity of it all and what we were potentially facing soon... brain surgery. I was diagnosed after elaborate testing and brain imaging with Chiari 1 Malformation and secondary Intracranial Hypertension, meaning this condition was caused by the former.
Chiari malformation type 1 is a structural abnormality of the cerebellum, the part of the brain that controls balance, and the skull. The malformation occurs when the lower part of the cerebellum extends below the foramen magnum (the large hole at the base of the skull which allows passage of the spinal cord), without involving the brain stem. Normally, only the spinal cord passes through the foramen magnum. Type 1 is the most common type of Chiari malformation and may not cause any symptoms. It is usually first noticed in adolescence or adulthood, often by accident during an examination for another condition. Symptoms, when present, may include headache, neck pain, unsteady gait, poor hand coordination, numbness and tingling of the hands and feet, dizziness, difficulty swallowing, and vision and speech problems. Chiari malformations are caused by structural defects in the brain and spinal cord that occur during fetal development. The underlying cause of the structural defects are not completely understood, but may involve genetic mutations or lack of proper vitamins or nutrients in the maternal diet
Intracranial hypertension is a condition due to high pressure within the spaces that surround the brain and spinal cord. These spaces are filled with cerebrospinal fluid (CSF), which cushions the brain from mechanical injury, provides nourishment, and carries away waste.
The most common symptoms of intracranial hypertension are headaches and visual loss, including blind spots, poor peripheral (side) vision, double vision, and short temporary episodes of blindness. Many patients experience permanent vision loss. Other common symptoms include pulsatile tinnitus (ringing in the ears) and neck and shoulder pain. Intracranial hypertension can be either acute or chronic. In chronic intracranial hypertension, the increased CSF pressure can cause swelling and damage to the optic nerve—a condition called papilledema.
We were given two options.I could submit to brain surgery, which seemed impossible for us to manage, but also carried the weight of possibly making things worse than they already were. Unfortunately, there are two different surgeries for these conditions and they conflict with one another. I could choose to have surgery on one condition or the other but not successfully both. This didn't seem very plausible to us. The next option? Lose 50-60 pounds, remove all stressors, go on a very limited diet of foods that do not cause swelling in the brain, and try to recover.
(there are large slots of time that are gone from my memory due to brain swelling, thankfully photos help to fill the gaps)
We spent some time as a family brainstorming ways to make it work. We landed in a hotel in Estes Park for a few months while searching for the perfect place for me to land and heal. All the while, my symptoms were still in mostly full swing, and Daniel had gone to work again to support us, this time in Loveland, Colorado. We finally found a space and began settling in. We moved in November 2018 and by Kasher's 1st birthday, I had managed to lose 40 pounds and symptoms were calming.
Throughout this entire situation, we have been on our own, fighting and making it. It has been a long road, but this wasn't actually the beginning. My birth was the beginning. I had this since birth and struggled different ways my entire life. Since these disorders affect the brain, there are emotional symptoms as well as physical. I've struggled with mental health issues, and autoimmune issues and did it all as my parents sat in silence knowing the origin, yet living in denial, never willing to let me know my underlying struggles.
Flash forward to May 2019, I became pregnant with my 3rd child. I have done everything i'm able to keep my body in check and not lose control of the brain swelling. Today I'm 32 weeks pregnant with Milo Beam. Our lease is up in May 2020, he is due at the end of January but we will likely have surgery to deliver him before that point in order to protect my body from hypertension and residual complication. I will also undergo surgery in order to not become pregnant again.
We have not been able to keep up with medical bills at all through this, and there are still many more to come. We are hopeful that we have gone through the darkest parts of this journey already ,but are also realistic in knowing that I could fall down again after surgery. Daniel is my best friend, and has been for the past 20 years. He's been my husband for the past 9 years. He does everything in his power to keep our family happy and stable. I can't imagine the amount of stress he endures each day fighting this battle alongside me, but i'm certainly lucky to have him by my side.
(I have bad days and better days, we try to get outside and be together as much as possible on the better days. Estes Park has been a magical place for that!)
I've worked so hard to be healthy enough for my babies, all i ever wanted in life was to be the mother i always dreamed of being. My kids missed their mom during all of this but I've also been right beside them the whole time.
we are asking for donations for a few reasons.
1. medical bills that are stacking up
2. counseling for all of us after what we have been through
3. getting into our next rental space that makes sense for our families needs
I'm not out of the woods yet, my husband and I are doing the hard work it takes to keep this battle under control. we are a one income family and he will need to take off work unpaid while i heal after giving birth. Our children are not in daycare, and we home-school my oldest. We are a tight knit family that wants to stay together. Please consider donating in order to help our family to thrive once more.
First off, in early 2018 I was in my 3rd trimester of my 2nd pregnancy. I was caring for my son Mullen, who was 4 years old at the time. We lived on the coast of Texas, and my husband Daniel was working full time to support our family on his income alone as an automotive technician. As I neared my due date (mid-March) I began having complications with pre-term labor. One day while preparing a green smoothie in my kitchen, I suddenly dropped to the kitchen floor, in a lifeless pile. I was 38 weeks pregnant and in the past few weeks had been hospitalized multiple times with dehydration and contractions that were very hard to control. My husband gathered me off the floor (he had been in the other room and ran to me as soon as he heard the fall) We decided together once everything calmed that we would get Mullen to bed that night and then get me up to the hospital, knowing they would end up wanting to deliver my baby since i had already dilated quite a bit prior to this happening.
My mother came over and stayed with Mullen, and I headed to the hospital in order to be monitored. After being monitored overnight, the decision came to deliver this baby since it was putting strain on my heart. We prepped for surgery, I'm lying in the operating room and suddenly an enormous anxiety covers my entire body and I tell them that something is wrong. They respond to me that they are "working on it" but apparently my blood pressure was dropping dramatically and there was fear in the air. My husband was rushed into the room and stood by my side not even aware he had almost lost me just moments prior! There was a successful delivery once the anesthesiologist adjusted everything accordingly so that I was once again stabilized.
My hospital stay was short and despite my horrible headache, I was sent home after 36 hours post-op. My parents had taken Mullen to their home (7 hours away from us, and the first time EVER i'd been away from my little boy) in order to allow him space to have fun while mommy healed and and adjusted to the new baby. One month after giving birth to Kasher, Mullen returned home and all seemed to be going well. About two weeks later, things dramatically turned for the worst.
I was nursing Kasher while sitting on our couch watching Mullen draw a picture at his craft table and eat a snack. Suddenly the urge to vomit hit me with enormous force. I placed Kasher in his Snuggle Me (a cozy bed type product for babies) and ran to the restroom. When I returned to the couch and placed my baby back on my breast, my body began to grow limp involuntarily. With what I had left in me, I placed him back in the Snuggle Me and collapsed. My body began shaking uncontrollably and I blacked out. When I woke my husband was holding me and Mullen was staring at me with widened eyes. This was the first of MANY episodes that were completely puzzling to us. As the days grew on, my symptoms escalated and before we knew it I was becoming less and less capable of being the involved mother I had always felt the most pride for being.
My husband chose to quit his job and move us back to Colorado where we had spent the past two years prior to moving back to Texas in order to be closer to extended family for the baby. This wasn't easy. The heat in Texas was exacerbating my symptoms and all we had was a 1991 Toyota 4Runner that didn't cool very well. We had researched my symptoms and been in touch with specialists trying to find answers. It was our last ditch effort and quite a risky one. So with NO support or help from my family, we began our trek across Texas to Colorado. The entire trip was terrifying and we were both quietly trying to deal with the idea that i was unlikely to live much longer.
There was seizure-like activity, syncope, heart palpitations, temporary memory loss, migraines, dystonia all over my body, hypoglycemic attacks, among many other horrid symptoms. It always hit without much warning, and I could never be alone anymore. It just wasn't safe. Somehow we made it to north Colorado and thankfully had the ability to stay with a friend while we balanced parenting with doctor visits. It took all of our savings to float through the summer of 2018.
After our first visit to the hospital, we were given answers. They seemed like a blessing because we had been through so much, but quickly turned worrisome because of the gravity of it all and what we were potentially facing soon... brain surgery. I was diagnosed after elaborate testing and brain imaging with Chiari 1 Malformation and secondary Intracranial Hypertension, meaning this condition was caused by the former.
Chiari malformation type 1 is a structural abnormality of the cerebellum, the part of the brain that controls balance, and the skull. The malformation occurs when the lower part of the cerebellum extends below the foramen magnum (the large hole at the base of the skull which allows passage of the spinal cord), without involving the brain stem. Normally, only the spinal cord passes through the foramen magnum. Type 1 is the most common type of Chiari malformation and may not cause any symptoms. It is usually first noticed in adolescence or adulthood, often by accident during an examination for another condition. Symptoms, when present, may include headache, neck pain, unsteady gait, poor hand coordination, numbness and tingling of the hands and feet, dizziness, difficulty swallowing, and vision and speech problems. Chiari malformations are caused by structural defects in the brain and spinal cord that occur during fetal development. The underlying cause of the structural defects are not completely understood, but may involve genetic mutations or lack of proper vitamins or nutrients in the maternal diet
Intracranial hypertension is a condition due to high pressure within the spaces that surround the brain and spinal cord. These spaces are filled with cerebrospinal fluid (CSF), which cushions the brain from mechanical injury, provides nourishment, and carries away waste.
The most common symptoms of intracranial hypertension are headaches and visual loss, including blind spots, poor peripheral (side) vision, double vision, and short temporary episodes of blindness. Many patients experience permanent vision loss. Other common symptoms include pulsatile tinnitus (ringing in the ears) and neck and shoulder pain. Intracranial hypertension can be either acute or chronic. In chronic intracranial hypertension, the increased CSF pressure can cause swelling and damage to the optic nerve—a condition called papilledema.
We were given two options.I could submit to brain surgery, which seemed impossible for us to manage, but also carried the weight of possibly making things worse than they already were. Unfortunately, there are two different surgeries for these conditions and they conflict with one another. I could choose to have surgery on one condition or the other but not successfully both. This didn't seem very plausible to us. The next option? Lose 50-60 pounds, remove all stressors, go on a very limited diet of foods that do not cause swelling in the brain, and try to recover.
(there are large slots of time that are gone from my memory due to brain swelling, thankfully photos help to fill the gaps)We spent some time as a family brainstorming ways to make it work. We landed in a hotel in Estes Park for a few months while searching for the perfect place for me to land and heal. All the while, my symptoms were still in mostly full swing, and Daniel had gone to work again to support us, this time in Loveland, Colorado. We finally found a space and began settling in. We moved in November 2018 and by Kasher's 1st birthday, I had managed to lose 40 pounds and symptoms were calming.
Throughout this entire situation, we have been on our own, fighting and making it. It has been a long road, but this wasn't actually the beginning. My birth was the beginning. I had this since birth and struggled different ways my entire life. Since these disorders affect the brain, there are emotional symptoms as well as physical. I've struggled with mental health issues, and autoimmune issues and did it all as my parents sat in silence knowing the origin, yet living in denial, never willing to let me know my underlying struggles.
Flash forward to May 2019, I became pregnant with my 3rd child. I have done everything i'm able to keep my body in check and not lose control of the brain swelling. Today I'm 32 weeks pregnant with Milo Beam. Our lease is up in May 2020, he is due at the end of January but we will likely have surgery to deliver him before that point in order to protect my body from hypertension and residual complication. I will also undergo surgery in order to not become pregnant again.
We have not been able to keep up with medical bills at all through this, and there are still many more to come. We are hopeful that we have gone through the darkest parts of this journey already ,but are also realistic in knowing that I could fall down again after surgery. Daniel is my best friend, and has been for the past 20 years. He's been my husband for the past 9 years. He does everything in his power to keep our family happy and stable. I can't imagine the amount of stress he endures each day fighting this battle alongside me, but i'm certainly lucky to have him by my side.
(I have bad days and better days, we try to get outside and be together as much as possible on the better days. Estes Park has been a magical place for that!)I've worked so hard to be healthy enough for my babies, all i ever wanted in life was to be the mother i always dreamed of being. My kids missed their mom during all of this but I've also been right beside them the whole time.
we are asking for donations for a few reasons.
1. medical bills that are stacking up
2. counseling for all of us after what we have been through
3. getting into our next rental space that makes sense for our families needs
I'm not out of the woods yet, my husband and I are doing the hard work it takes to keep this battle under control. we are a one income family and he will need to take off work unpaid while i heal after giving birth. Our children are not in daycare, and we home-school my oldest. We are a tight knit family that wants to stay together. Please consider donating in order to help our family to thrive once more.
Organizer and beneficiary
Anne Yorke-Singley
Organizer
Estes Park, CO
Daniel Singley
Beneficiary
