UPDATE: Thanks to the kindness and generosity of people donating to this fundraiser, we have reached our original goal! I'm going to keep it open for now, so anyone wishing to help still can. Our whole family is so grateful for all of the support. Thank you!!-Mary
On February 3, 2018 my niece Kaitlyn Anatriello and her boyfriend Scott Sedor welcomed their daughter Arya Winnie Anatriello into the world. With Kaitlyn experiencing no symptoms of pregnancy, Arya was a complete, but very welcomed surprise. She was born prematurely, at approximately 30 weeks and weighed 2 lbs, 14 oz. At first everything looked ok, however a few days later, doctors informed Kaitlyn and Scott that Arya had a condition called hydranencephaly.
At some point during her gestation, fluid had filled the cavities where her brain should have developed. She only has about 10% of the brain tissue that is considered normal. Her brain stem is currently keeping her neo-natal instincts functioning, but at some point those instincts will likely cease. Since she does not have the part of the brain that normally takes over for those instincts, it eventually will result in her death. There is no way of knowing how long she has; every child with this condition is different.
Arya spent the first two months of her life in the NICU, but she is now home with her family. In setting up this fundraiser, we hope to help with the financial aspect of caring for a child with a terminal condition. By easing some of the burden of financial worries, including household living expenses, baby care, transportation costs, and funeral expenses when the time comes, it will allow Kaitlyn and Scott to focus as much as possible on making the most of however much time they have with Arya. Right now estimates are that she may not see her first birthday, but we continue to hope that Arya will beat the odds. Children with hydranencephaly can and do live beyond their first birthday, sometimes for years.
However, this is tempered with the realization that she would be disabled, only time would tell the severity.
Our whole family thanks you for your support and love for Kaitlyn, Scott and Arya. We will continue to update you on how they are doing and on Arya's conditions. Please feel free to share this and help us spread the word. Thank you!
Mary
Please read on for a heartfelt letter from Scott regarding their situation.
A letter from Scott:
"At 6AM on February 3rd, 2018, my girlfriend, Kaitlyn Anatriello woke me up complaining about stomach pain. She told me that it was the worst she's ever felt. The pain caused her to throw up.
She had woken her mother a short time earlier. They were preparing to go to the ER. The tone of her voice and the scared look on her face gave me the feeling that something was wrong. Naturally I woke up and dressed myself for the trip to Albany Med.
Kaitlyn has always been the kind of girl who asks for nothing, and makes so little noise that you would hardly notice she was in the room. Mild tempered, and soft spoken, but now she was screaming in pain. The slightly more than 1/2 hour ride felt extended. I rememeber wanting so badly to be at the hospital where they could tell us what was wrong and ease her pain.
We were taken into a room almost immidiately when we arrived. After asking several questions the doctors decided to do an ultrasound. They determined that she was pregnant and that they were only 15 weeks along. This was unbelievable. There were no signs of pregnancy. No weight gain, morning sickness, or appetite changes. There was no difference in menstrual cycle. The doctor said "congratulations", as I walked into the room after using the bathroom. After hearing the news, I felt as if all my blood was super-heated and climbing up my spine, and into my brain.
It was as if my entire body was blushing. I have never passed out suddenly before, but this was probably the closest I have ever come to fainting. From this moment until now, at times I am sure that I will wake up from what feels like a strange dream where anything that can happen WILL happen. I didn't wake up though,
and the nurse started to give her a dose morphine to stop the pain using an IV.
Seconds after the nurse stepped away, Kaitlyn looked at me with a terrified and knowing expression on her face that I will never forget. "I have to push!" Her water broke, and medical staff began to pour into the room. People were yelling, "code white!" Everyone seemed to be in a flurry.
I felt that anything could happen in this moment. They moved us into another room where they began to tell her not to push. She would reply by telling us that she absolutely HAD to, which really freaked me out. After a few moments, they told her that she could push, and boom, I saw these tiny little feet shoot up into the air as if the baby had slipped on ice. At 7:37AM Kaitlyn had suddenly delivered our daughter, Arya Winnie Anatriello. All 2 lbs 14 oz. of her. They took Arya to the NICU unit to prepare her for 2 months of life within the isolette. (A tiny plastic baby box meant to mimic the mother's womb which we refered to as the "Plastic Palace")
As new parents, we had a lot to talk about while we waited almost 6 hours to see our baby. She didn't have a name, or clothes, or a place to sleep. It didn't seem like long enough. I've never been so nervous to meet someone. During this time we were visited by various staff who explained to us that she seemed to be around 30 weeks along (10 weeks early) rather than 15.
They also told us that there was an abruption of the placenta. (The organ which provides nutrition to the baby had begun to detatch from the uterine wall. This could explain the bleeding that occured during what we believed to be natural ovulation.) Kaitlyn and I took the time to let some of our family members know what happened. No one who I told would beleive me. It's the kind of bizzarre situation that I would make up to tell my friends as a joke. "Hey, just calling to let you know that I suddenly had a baby this morning. Anyways, how're things with you? Seriously though, I am a father." To my father - "Good morning grandpa." You get the point. People were very confused.
She was so small. We entered her room in the NICU, terrified to see this little human that we had unknowingly created. We finally saw Arya, in her box with a mask attatched to her face. Thankfully she only needed the CPAP for around 10 hours. I remember feeling sorry that our diet consisted mainly of kettle cooked chips, and brick oven pizza during the pregnancy. Maybe if we had eaten better and had vitimans, she would have been larger. They ended up putting her under ultraviolet lights to clear up any yellowing of the skin from jaundice. The nurses would put a little mask to cover her eyes from over exposure to the light. The cover bothered me, but she did also remind me of some kind of tiny blind ninja, so the humor masked my fear at the time.
For the next three days we would visit her and spend as much time as we could in the room with her. When people would ask us what her name was, we would reply with, "A girl has no name."A quote from Arya Stark from Game of Thrones, who happened to be our favorite character. We had a name! While we waited patiently for the opportunity to hold Arya, all of my fears were
beginning to draw themselves into the forfront of my mind. Was she going to be okay? I spoke to my brother who reminded me that premature babies could potentially be more pron to mental or physical disabilities.
Growing up with siblings who have struggled with these issues themselves, and working as a Direct Support Professional had bred a fear within me of having a child who might also struggle in this way. I've seen my family be processed through many programs and social workers. When the nurse came into our room and told us that Arya's brainscans were completely normal, I took a huge breath of relief.
About an hour later, the same nurse stopped by to inform us that the results actually had not come back yet, and she had read the wrong paperwork. I felt my heart sink. We waited another day for the results of those tests.The next day was my birthday, February 6th. Arya's birthday would be 3 days before mine from now on. She was going to steal all my presents at our double birthday parties for the rest of my life, but she is the gift of a life-time, so I don't mind. These are the kind of things that we planned for until we got the real brain scan results. The neurologists discovered that Arya had an extremely rare and severe brain abnormality. They called it "hydranencepholy". An absence of brain material with "lakes of fluid" where that matter would normally exist. There is no way to know why this happened. It was described as some sort of "freak accident."
If we had known of the pregnancy, we would have caught this abnormaility within the first trimester, but they could not have treated it. The diagnosis is so severe that the MRI's which were taken over a month later showed that she has only 10% of a normal human brain. Arya has a brain stem, which will control her prenatal reflexes such as pumping blood through her heart and breathing. The only other part that is intact is the cerebellum, which helps with coordination of muscular activity. Everything else within her skull are what can be described as "lakes of fluid". We have been told that babies with this kind of abnormality typically have not survived until their first birthday. Arya can not see or cooridinate well enough to eat on her own. Eventually there can be a build up of pressure on the brain stem which would essentially choke out her relflexive functions. Her heart would stop, or she would stop breathing.
My greatest fear had been far surpassed. Not only would Arya struggle with a mental disability, she would be so severely affected that it take her from us indefinitely. Our dreams were dissolved in an instant. We were now required to answer questions and make decisions that would present a greater challenge then any others we have faced. Since Arya is unable to feed normally, we were given the option to do a surgical procedure in order to use a G-Tube which would allow us to feed her by putting food directly into her stomach through a feeding tube which reminds me of the hole you would blow air through to inflate a blow up mattress or beach ball. Arya may not have a long life. Our logic tells us that if we can spare her the experience of a surgery, then we will. We opted to go with a less common method of feeding.
The doctors and nurses were using an NG-tube (a thin, long tube that is inserted through the nose and into the stomach) for feeds during her stay at the Albany Med NICU unit. We were tought how to insert this tube and use a special electronic machine to feed her. The process can take up to 1 hour and a half including the cleaning and priming of the device, and we have been doing this every 3 hours or so.
After 2 months of tests, growth, and some preparation and training we were able to take her home. Over the winter we moved in with Kaitlyn's mother and father. Although they some of the most caring and supportive folks I have ever had the fortune of meeting, we live between two rooms in her parents house where we are having a difficult time to find the space to exist comfortably. While we are eternally greatful for this support, I have been struggling to find the right fit as far as work goes, and this situation has made it increasingly difficult to find work that affords me any time to spend with our daughter.
I am currently spending 60 hours a week working 12+ hour shifts for a chemical lawn care company. I know it isn't fair to Arya and her mother. Each day I leave at 6AM, kiss my exhausted girlfriend and fussing daughter goodbye, and I tell them to enjoy their day, and I don't get home until 4:30PM - 8:00PM. When I finally get home, I can not touch my daughter because I am covered in pesticides. After I shower, I have enough time to lay exhausted with her and her mother before I go to sleep in order to wake up and do it again.
On a beautiful day while I was at work, the inner turmoil caught up with me and I found myself immobilized by frustration, anger, and sadness. During the past few months I have kept our situation somewhat quiet, only answering questions if somebody asked, but in this moment I took lunch and wrote a facebook status explaining my frustrations. A handful of friends who are familiar with our situation have suggested that I make this gofundme account, along with a ton of other thoughtful advice and prayers.
With the some encouragement of a life long friend, I have built up the motivation to write this story. With any donations from the kind people of the world, we will be able to rest assured that the costs of funeral arrangements could be paid for in part, or maybe even in full. Any donations beyond that will go to enriching any time that we have to spend with our daughter.
Depending upon how this goes, I may be able to take some time off of work and spend the summer with my beautiful daughter and her equally beautiful and loving mother. My hope is that we can afford the opportunity to pack as much quality experience and love into the time we have with Arya. We will do our best to upload photos, and give proper updates whenever possible. Thank you so much for reading our story. If you have nothing to give, just keep Arya in your heart, and hope for her to have a full and loving life. Just knowing that her story is read or felt brings me a feeling of peace."
On February 3, 2018 my niece Kaitlyn Anatriello and her boyfriend Scott Sedor welcomed their daughter Arya Winnie Anatriello into the world. With Kaitlyn experiencing no symptoms of pregnancy, Arya was a complete, but very welcomed surprise. She was born prematurely, at approximately 30 weeks and weighed 2 lbs, 14 oz. At first everything looked ok, however a few days later, doctors informed Kaitlyn and Scott that Arya had a condition called hydranencephaly.
At some point during her gestation, fluid had filled the cavities where her brain should have developed. She only has about 10% of the brain tissue that is considered normal. Her brain stem is currently keeping her neo-natal instincts functioning, but at some point those instincts will likely cease. Since she does not have the part of the brain that normally takes over for those instincts, it eventually will result in her death. There is no way of knowing how long she has; every child with this condition is different.
Arya spent the first two months of her life in the NICU, but she is now home with her family. In setting up this fundraiser, we hope to help with the financial aspect of caring for a child with a terminal condition. By easing some of the burden of financial worries, including household living expenses, baby care, transportation costs, and funeral expenses when the time comes, it will allow Kaitlyn and Scott to focus as much as possible on making the most of however much time they have with Arya. Right now estimates are that she may not see her first birthday, but we continue to hope that Arya will beat the odds. Children with hydranencephaly can and do live beyond their first birthday, sometimes for years.
However, this is tempered with the realization that she would be disabled, only time would tell the severity.
Our whole family thanks you for your support and love for Kaitlyn, Scott and Arya. We will continue to update you on how they are doing and on Arya's conditions. Please feel free to share this and help us spread the word. Thank you!
Mary
Please read on for a heartfelt letter from Scott regarding their situation.
A letter from Scott:
"At 6AM on February 3rd, 2018, my girlfriend, Kaitlyn Anatriello woke me up complaining about stomach pain. She told me that it was the worst she's ever felt. The pain caused her to throw up.
She had woken her mother a short time earlier. They were preparing to go to the ER. The tone of her voice and the scared look on her face gave me the feeling that something was wrong. Naturally I woke up and dressed myself for the trip to Albany Med.
Kaitlyn has always been the kind of girl who asks for nothing, and makes so little noise that you would hardly notice she was in the room. Mild tempered, and soft spoken, but now she was screaming in pain. The slightly more than 1/2 hour ride felt extended. I rememeber wanting so badly to be at the hospital where they could tell us what was wrong and ease her pain.
We were taken into a room almost immidiately when we arrived. After asking several questions the doctors decided to do an ultrasound. They determined that she was pregnant and that they were only 15 weeks along. This was unbelievable. There were no signs of pregnancy. No weight gain, morning sickness, or appetite changes. There was no difference in menstrual cycle. The doctor said "congratulations", as I walked into the room after using the bathroom. After hearing the news, I felt as if all my blood was super-heated and climbing up my spine, and into my brain.
It was as if my entire body was blushing. I have never passed out suddenly before, but this was probably the closest I have ever come to fainting. From this moment until now, at times I am sure that I will wake up from what feels like a strange dream where anything that can happen WILL happen. I didn't wake up though,
and the nurse started to give her a dose morphine to stop the pain using an IV.
Seconds after the nurse stepped away, Kaitlyn looked at me with a terrified and knowing expression on her face that I will never forget. "I have to push!" Her water broke, and medical staff began to pour into the room. People were yelling, "code white!" Everyone seemed to be in a flurry.
I felt that anything could happen in this moment. They moved us into another room where they began to tell her not to push. She would reply by telling us that she absolutely HAD to, which really freaked me out. After a few moments, they told her that she could push, and boom, I saw these tiny little feet shoot up into the air as if the baby had slipped on ice. At 7:37AM Kaitlyn had suddenly delivered our daughter, Arya Winnie Anatriello. All 2 lbs 14 oz. of her. They took Arya to the NICU unit to prepare her for 2 months of life within the isolette. (A tiny plastic baby box meant to mimic the mother's womb which we refered to as the "Plastic Palace")
As new parents, we had a lot to talk about while we waited almost 6 hours to see our baby. She didn't have a name, or clothes, or a place to sleep. It didn't seem like long enough. I've never been so nervous to meet someone. During this time we were visited by various staff who explained to us that she seemed to be around 30 weeks along (10 weeks early) rather than 15.
They also told us that there was an abruption of the placenta. (The organ which provides nutrition to the baby had begun to detatch from the uterine wall. This could explain the bleeding that occured during what we believed to be natural ovulation.) Kaitlyn and I took the time to let some of our family members know what happened. No one who I told would beleive me. It's the kind of bizzarre situation that I would make up to tell my friends as a joke. "Hey, just calling to let you know that I suddenly had a baby this morning. Anyways, how're things with you? Seriously though, I am a father." To my father - "Good morning grandpa." You get the point. People were very confused.
She was so small. We entered her room in the NICU, terrified to see this little human that we had unknowingly created. We finally saw Arya, in her box with a mask attatched to her face. Thankfully she only needed the CPAP for around 10 hours. I remember feeling sorry that our diet consisted mainly of kettle cooked chips, and brick oven pizza during the pregnancy. Maybe if we had eaten better and had vitimans, she would have been larger. They ended up putting her under ultraviolet lights to clear up any yellowing of the skin from jaundice. The nurses would put a little mask to cover her eyes from over exposure to the light. The cover bothered me, but she did also remind me of some kind of tiny blind ninja, so the humor masked my fear at the time.
For the next three days we would visit her and spend as much time as we could in the room with her. When people would ask us what her name was, we would reply with, "A girl has no name."A quote from Arya Stark from Game of Thrones, who happened to be our favorite character. We had a name! While we waited patiently for the opportunity to hold Arya, all of my fears were
beginning to draw themselves into the forfront of my mind. Was she going to be okay? I spoke to my brother who reminded me that premature babies could potentially be more pron to mental or physical disabilities.
Growing up with siblings who have struggled with these issues themselves, and working as a Direct Support Professional had bred a fear within me of having a child who might also struggle in this way. I've seen my family be processed through many programs and social workers. When the nurse came into our room and told us that Arya's brainscans were completely normal, I took a huge breath of relief.
About an hour later, the same nurse stopped by to inform us that the results actually had not come back yet, and she had read the wrong paperwork. I felt my heart sink. We waited another day for the results of those tests.The next day was my birthday, February 6th. Arya's birthday would be 3 days before mine from now on. She was going to steal all my presents at our double birthday parties for the rest of my life, but she is the gift of a life-time, so I don't mind. These are the kind of things that we planned for until we got the real brain scan results. The neurologists discovered that Arya had an extremely rare and severe brain abnormality. They called it "hydranencepholy". An absence of brain material with "lakes of fluid" where that matter would normally exist. There is no way to know why this happened. It was described as some sort of "freak accident."
If we had known of the pregnancy, we would have caught this abnormaility within the first trimester, but they could not have treated it. The diagnosis is so severe that the MRI's which were taken over a month later showed that she has only 10% of a normal human brain. Arya has a brain stem, which will control her prenatal reflexes such as pumping blood through her heart and breathing. The only other part that is intact is the cerebellum, which helps with coordination of muscular activity. Everything else within her skull are what can be described as "lakes of fluid". We have been told that babies with this kind of abnormality typically have not survived until their first birthday. Arya can not see or cooridinate well enough to eat on her own. Eventually there can be a build up of pressure on the brain stem which would essentially choke out her relflexive functions. Her heart would stop, or she would stop breathing.
My greatest fear had been far surpassed. Not only would Arya struggle with a mental disability, she would be so severely affected that it take her from us indefinitely. Our dreams were dissolved in an instant. We were now required to answer questions and make decisions that would present a greater challenge then any others we have faced. Since Arya is unable to feed normally, we were given the option to do a surgical procedure in order to use a G-Tube which would allow us to feed her by putting food directly into her stomach through a feeding tube which reminds me of the hole you would blow air through to inflate a blow up mattress or beach ball. Arya may not have a long life. Our logic tells us that if we can spare her the experience of a surgery, then we will. We opted to go with a less common method of feeding.
The doctors and nurses were using an NG-tube (a thin, long tube that is inserted through the nose and into the stomach) for feeds during her stay at the Albany Med NICU unit. We were tought how to insert this tube and use a special electronic machine to feed her. The process can take up to 1 hour and a half including the cleaning and priming of the device, and we have been doing this every 3 hours or so.
After 2 months of tests, growth, and some preparation and training we were able to take her home. Over the winter we moved in with Kaitlyn's mother and father. Although they some of the most caring and supportive folks I have ever had the fortune of meeting, we live between two rooms in her parents house where we are having a difficult time to find the space to exist comfortably. While we are eternally greatful for this support, I have been struggling to find the right fit as far as work goes, and this situation has made it increasingly difficult to find work that affords me any time to spend with our daughter.
I am currently spending 60 hours a week working 12+ hour shifts for a chemical lawn care company. I know it isn't fair to Arya and her mother. Each day I leave at 6AM, kiss my exhausted girlfriend and fussing daughter goodbye, and I tell them to enjoy their day, and I don't get home until 4:30PM - 8:00PM. When I finally get home, I can not touch my daughter because I am covered in pesticides. After I shower, I have enough time to lay exhausted with her and her mother before I go to sleep in order to wake up and do it again.
On a beautiful day while I was at work, the inner turmoil caught up with me and I found myself immobilized by frustration, anger, and sadness. During the past few months I have kept our situation somewhat quiet, only answering questions if somebody asked, but in this moment I took lunch and wrote a facebook status explaining my frustrations. A handful of friends who are familiar with our situation have suggested that I make this gofundme account, along with a ton of other thoughtful advice and prayers.
With the some encouragement of a life long friend, I have built up the motivation to write this story. With any donations from the kind people of the world, we will be able to rest assured that the costs of funeral arrangements could be paid for in part, or maybe even in full. Any donations beyond that will go to enriching any time that we have to spend with our daughter.
Depending upon how this goes, I may be able to take some time off of work and spend the summer with my beautiful daughter and her equally beautiful and loving mother. My hope is that we can afford the opportunity to pack as much quality experience and love into the time we have with Arya. We will do our best to upload photos, and give proper updates whenever possible. Thank you so much for reading our story. If you have nothing to give, just keep Arya in your heart, and hope for her to have a full and loving life. Just knowing that her story is read or felt brings me a feeling of peace."
Organizer and beneficiary
Kaitlyn Anatriello
Beneficiary