abel
edward
andrews
monday
april 5, 2010
7:46am
Abel was born unable to breath on April 5th, 2010 after a long and traumatic birth. We were at birth center with two Licensed Midwives (CPM) in attendance. He suffered from Hypoxic Ischemic Encephalopathy (HIE) from the lack of oxygen. The midwives could not get him to breath or respond and so they called 911. We lay next to him and called his name, telling him that we loved him and to Breathe. I had to stay at the birth center while my husband rode with our newborn son in the ambulance, still not knowing if he was going to live or die. By the time I was allowed to go to the hospital the doctors had managed to resuscitate him. He spent 2 weeks in the NICU. There were lots of scary moments, tests, and procedures. The doctors explained that brain damage had occurred from the long period without oxygen. It was the longest two weeks of my life and we had to beg them to please let us take him home. Abel was in a lot of pain and distress and screamed constantly. The doctors said that the asphyxiation caused the same sensation in his brain that a drug addict experiences when going through withdrawals. It was a very dark time for all of us. The PTSD combined with the sleep deprivation had terrible effects on both my husband and I. I had nightmare recall flashes of the birth and Abel's injuries. I could not remember simple things like how streetlights worked and my way around the grocery store. I went through a year, of what I can only describe as Stockholm Syndrome. I craved contact from the midwives. I strived to get their forgiveness for my apparent failure as a woman to safely deliver my child. The people who should have been there for comfort and recovery, instead avoided and blamed us. We are all still trying to heal, a year later.
When Abel was a year old they officially diagnosed him with Athetoid Cerebral Palsy. The part of his brain that controls his muscles was damaged. His movements are both to stiff and to floppy. It takes a lot more effort and focus for him to make even small movements, like lifting his head, picking something up or holding his torso straight. They are still not sure if he will ever be able to walk, talk or even sit up. This diagnosis is what finally woke us up completely to just how severe the damage had been. The more we learned the more we were faced with just how preventable his injuries were. The diagnosis of CP carries an average pricetag of $20 million dollars for a lifetime of care. We approached our midwives with our overwhelming medical expenses and that is when we were coldly told that they are not required to carry any form of liability insurance. For the first time, she said that midwifery is dangerous and that was a risk we took. They were not willing to help us in any way.
The good news is that Abel is an amazing, determined, smart and funny little boy! He tries hard to do all of his therapies and has made a lot of progress. Our brains have an amazing ability to heal and grow, especially in babies. That is why it is really important that we do as many therapies and treatments as we can now. His days are packed full of appointments but he always keeps his cheerful, friendly smile on his face. We have good insurance and it covers Abel’s Physical, Speech and Occupational Therapy for part of the year. It does not allow as many visits as are needed so we have to pay for those out of pocket. He also goes to cranial sacral and gets chiropractic treatments to help his muscles relax and to keep his skeletal system in the proper positions. The Aquatic Therapy also helps with that and to learn more movements in the weightlessness of the water. When he turns two, they recommend that he starts Hippotherapy, which is horseback riding with several helpers to walk the horse and keep the kids safe. The gentle movements of the horse will help him learn to sit up and strengthen his torso not to mention being a fun new experience! We hope to take Abel to San Francisco to see Anat Baniel, who has developed a new type of therapy, ABM, that is having amazing results. Unfortunately, it is not covered by insurance and is very expensive. One week is $2,500 plus we need to cover airfare and a hotel. He has done 40 hours of Hyperbaric Oxygen Therapy. This is where get into a pressurized oxygen chamber with him and stay there for an hour or more. This helps to get high doses of oxygen to all the cells in his brain, which helps them heal. It is $2,000 a month and requires a huge time commitment. During the day, Abel and I are limited in where we can go because we only have one car. There are also several therapies and treatments that we have not tried yet.
We are just starting to realize the amount of adaptive equipment that Abel needs to help him have a decent quality of life. The average lifetime cost of a child with CP is upwards of 20 million dollars. It is impossible to say at this time just how much care and help he will need as he gets older. We are working on getting him an iPad and other electronic communication equipment.
We just moved to the Portland area for better opportunities and a new start for our family. It is really important to me that he also get to see new and fun things and to socialize. I want him to have a happy childhood and experience the same things as the other kids.
Abel is adorable, smart, unique and funny. We are so honored and blessed to be his parents. We have started this website for him. www.weareabel.org We hope to record his progress and journey there, as well as raise awareness and funds for more treatments. We are also working hard to advocate for changes to Oregon's midwifery laws, so that we can prevent other injuries. Our deepest hope is that we can use our struggle to help protect and strengthen others.
When Abel was a year old they officially diagnosed him with Athetoid Cerebral Palsy. The part of his brain that controls his muscles was damaged. His movements are both to stiff and to floppy. It takes a lot more effort and focus for him to make even small movements, like lifting his head, picking something up or holding his torso straight. They are still not sure if he will ever be able to walk, talk or even sit up. This diagnosis is what finally woke us up completely to just how severe the damage had been. The more we learned the more we were faced with just how preventable his injuries were. The diagnosis of CP carries an average pricetag of $20 million dollars for a lifetime of care. We approached our midwives with our overwhelming medical expenses and that is when we were coldly told that they are not required to carry any form of liability insurance. For the first time, she said that midwifery is dangerous and that was a risk we took. They were not willing to help us in any way.
The good news is that Abel is an amazing, determined, smart and funny little boy! He tries hard to do all of his therapies and has made a lot of progress. Our brains have an amazing ability to heal and grow, especially in babies. That is why it is really important that we do as many therapies and treatments as we can now. His days are packed full of appointments but he always keeps his cheerful, friendly smile on his face. We have good insurance and it covers Abel’s Physical, Speech and Occupational Therapy for part of the year. It does not allow as many visits as are needed so we have to pay for those out of pocket. He also goes to cranial sacral and gets chiropractic treatments to help his muscles relax and to keep his skeletal system in the proper positions. The Aquatic Therapy also helps with that and to learn more movements in the weightlessness of the water. When he turns two, they recommend that he starts Hippotherapy, which is horseback riding with several helpers to walk the horse and keep the kids safe. The gentle movements of the horse will help him learn to sit up and strengthen his torso not to mention being a fun new experience! We hope to take Abel to San Francisco to see Anat Baniel, who has developed a new type of therapy, ABM, that is having amazing results. Unfortunately, it is not covered by insurance and is very expensive. One week is $2,500 plus we need to cover airfare and a hotel. He has done 40 hours of Hyperbaric Oxygen Therapy. This is where get into a pressurized oxygen chamber with him and stay there for an hour or more. This helps to get high doses of oxygen to all the cells in his brain, which helps them heal. It is $2,000 a month and requires a huge time commitment. During the day, Abel and I are limited in where we can go because we only have one car. There are also several therapies and treatments that we have not tried yet.
We are just starting to realize the amount of adaptive equipment that Abel needs to help him have a decent quality of life. The average lifetime cost of a child with CP is upwards of 20 million dollars. It is impossible to say at this time just how much care and help he will need as he gets older. We are working on getting him an iPad and other electronic communication equipment.
We just moved to the Portland area for better opportunities and a new start for our family. It is really important to me that he also get to see new and fun things and to socialize. I want him to have a happy childhood and experience the same things as the other kids.
Abel is adorable, smart, unique and funny. We are so honored and blessed to be his parents. We have started this website for him. www.weareabel.org We hope to record his progress and journey there, as well as raise awareness and funds for more treatments. We are also working hard to advocate for changes to Oregon's midwifery laws, so that we can prevent other injuries. Our deepest hope is that we can use our struggle to help protect and strengthen others.
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