It was hard for me to walk past all the rows of children. So many beautiful families. So many different heartaches. I tried to distract myself with the breathtaking views of the Portland skyline while we waited and gave Abel a snack. It was hard for me to see all those people struggling. I was reminded of the summer I brought my Uncle to OHSU for his transplant surgeries. I wanted to give rub backs, whisper encouragement and bring hot cups of coffee to all of them. It was surreal for me to remember that now I am the one standing in the Doernbecher waiting room with tears in my eyes desperately needing someone to tell me that this would all go away.
I still dread the weigh in. (A couple months ago a nurse rudely threatened that she was going to force him to get a feeding tube). I work really hard but it is never enough. I don't think other parents realize how much of my day is still consumed by feeding Abel because he cannot feed himself. 5 times a day, I have to buckle and strap him into his chair and sit in front of him on the floor and slowly feed him a giant bowl of food. Food that is fresh and nutritious and handmade. I add bacon, butter and avocado to everything to help bulk up his calories. At the end I let him try to use the spoon with a little help. It takes a very long time but he is so determined. He never gives up. If I am lucky I have time to clean up the mess it makes in time to go cook him another meal. So, I hope you all can understand how crushed I was when they marked Failure to Thrive on his paperwork. I understand it is because he is under weight. Words matter though, and that is not what Failure to Thrive "means". If there is one thing that Abel has proven it is an amazing ability to thrive, despite the odds or difficulty. He thrives.
Dr Peter Blasco was nice and obviously had a lot of experience. The best part of the day was playing in therapy. Abel and the physical therapist, Will, had a great time laughing and playing together. He even got Abel's jokes! This is what their final report said.
"Abel is a well-developed, well-nourished, healthy-appearing 19-month old boy who is alert and in no distress. He is eagerly interactive and very pleasant." Length is about 10th centile, and weight is below 3rd centile.
"Abel tends to keep the left hand fisted a good bit of the time and always prefers to reach with the right hand. He has a lot of extraneous movement going on. It is poorly controlled. Some of it is jerky, some is dystonic, and some is athetoid. There is a great deal of open-mouth posturing and a lot of tongue thrusting. Muscle tone is notably increased throughout the extremities and has decreased through the trunk."
In one section of the report his gross muscle skills are listed as at or below 3 month and in another place they list it as less than 6 months. (That's tough to hear, tough to read, tough to type . . . it's tough to see.)
"In prone he will get his head up. He tends to flip over when rolling. he often gets his arms stuck underneath him. he does not generate much at all in the way of head-righting in supported sitting. In supported stand he bears weight well and he likes to take steps. (yay!) He will reach out and grasp an object. It is a slow process on which he obviously concentrates."
1. History of Birth Asphyxia
2. Extrapyramidal Cerebral Palsy on the Choreoathetoid Spectrum.
3. Failure to Thrive.
4. Cognitive level uncertain. Abel seems very bright, very social. (Love!) Fine motor and vocal functions are both very compromised by his motor disability.
Of course they want us to resume all the physical, occupational and speech therapies as well as any other treatments we are able to do. We were reminded again that the brain is the most adaptable to growth before the age of 2. (That clock is always ticking in the back of my mind. Tick. Tock. Only 5 more months. Tick. Tock.) The Physical Therapist did casually mention that he would need a wheel chair, at least for some amount of time. He said that the rule is, if he is not sitting by 2 he will not walk unassisted ever. If he is not talking by 4 he won't. (Tick. Tock) They always mention these things casually because it is everyday news to them. Me however, it knocks the wind right out of. Whoooosh. There goes the little flame of hope . . .
Just like the day we had to give our dog, Juno, away. I crumbled instead of my husband when I thought it would be the other way around. I cried a lot. We went downtown on the Tram afterwards. Rode around on the Street Cars, tried Ben and Jerry's Schweddy Balls (its been banned from stores) and explored the city that we are learning to love to call home. I am so grateful for my husband who sweeps in and picks up the pieces without skipping a beat.
"BEING DEEPLY LOVED BY SOMEONE
GIVES YOU STRENGTH,
WHILE LOVING SOMEONE DEEPLY
GIVES YOU COURAGE." - Lao Tzu
 Taking the Sky Tram downtown from Doernbechers. MY strength. My courage. All my love.
Abel & Henry's story
kval Eugene report
written by beth ford
_
ASTORIA, Ore. - On August 4, 2009, Mindy and Phillip Bizzell were in the middle of a nightmare; Mindy Bizzell was laboring with their second child in the back seat of their car, with Phillip behind the wheel.
"We get on the Astoria Bridge, which is a 4.5 mile-long bridge, and the baby is being born on the bridge," said Mindy Bizzell.
But baby Henry was feet first, something the Bizzells say their midwife never checked for at any point. So in the middle of labor, Henry got stuck.
"He's half out of me and half inside me and he can't breathe," explained Bizzell.
When they finally got to the hospital, it took a doctor three tries to extract Henry with forceps. After CPR, Henry's little heart starting beating again, but only for 3.5 more days.
"We removed him from life support because he was, he had no brain activity. So he was gone," said Bizzell.
The Bizzell's midwife -- Tamy Roloff -- is licensed in Washington, not in Oregon, but practices in both states.
"We put our trust in her, we expected a level of care, I think we expected a level of care similar to what we had at a hospital. We weren't educated enough between the differences betweeo those two things," said Mindy Bizzell.
Because Roloff is unlicensed in Oregon, the Bizzells have no recourse after Henry's death, no consequences for the midwife, or even an investigation. A year after the death, the Bizzells gave birth to a daughter, but she could never replace their son.
"We always have a missing seat at the table, forever," she said.
Kristine Andrews' story is different; she walked away from her birth with her son. But he is disabled, which she blames in part on her midwives from Motherwise in Bend.
Andrews said her midwives didn't take her medical tests seriously, like when her blood pressure soard at the end of her pregnancy.
"They said 'no, you're fine, we just want you to eat a cucumber every day,'" remembered Andrews.
On the night her contractions started, Andrews said the licensed midwife with her at the time (Motherwise has a number of midwives on staff) was distracted by her own baby. That midwife sent her home, saying she had a urinary tract infection. Immense pain brought her back to Motherwise clinic that night.
The next day, when Abel was finally born, he wasn't breathing.
Andrews said the midwives, licensed and unlicensed both, didn't know what to do with a newborn that wasn't breathing.
"They just had the look on their face of like trying to remember what they'd read in a book somewhere, like 'umm, what do we do now?'"
After frantic 911 calls, the baby went to the hospital. Doctors warned, because Abel had gone so long without oxygen during labor, he might be brain damaged. The official diagnosis came a year later: cerebral palsy.
"They didn't know if he'll be able to walk, they don't know if he'll be able to talk, they don't know if he'll be able to sit up, he can't do that now still."
Andrews said she blames her midwives for ignoring warning signs during pregnancy and labor. Now, Andrews, her husband, and Abel take like one day at a time.
"This is a lifetime of hardship for our son," said Andrews. "I worry that he won't forgive us for making that choice."
Tamy Roloff, the Bizzell's midwife, said she did not want to comment on the story. She told KVAL News she is currently not practicing as a midwife. The owner of Motherwise in Bend said she was "unable to comment" on the story.
Beth Ford with KVAL in Eugene is doing a 3 part series on Midwifery. The dangers, the regulations, the accountability and what legislators are planning to do about it. Margarita's StoryPart 1(above) is Margarita & Shazad'sheartbreaking story. There is a tiny glimpse of Abel & I at the end as a preview for tomorrow. Part 2 is our story with another affected family's and will air Tuesday at 5pm. KVAL will post it to their website after it airs. Part 3 will be on Wednesday evening at 5pm and will address legislation that Rep. Mitch Greenlick, and others, are planning to bring forward to address this issue. Please, . . . contact your representatives and let them know that you support legislation for regulations, malpractice insurance, accountability and transparency for midwives in Oregon. It doesn't have be a lengthy report, just a quick emailed note can make all the difference! Click here for topic points & link to your area Legislator.
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.
To all the beautiful strong moms of special needs children.
you inspire & give me strength each & everyday.
One of MY favorite things
is re-discovering the world
through Abel's eyes.
Here are the highlights this week.
Week no. 1
no. 1 : Brett Dennen, "come back kid (That's my dog)"
(You can't make stuff this good up!)
NO. 2: beecher's "no woman" jerk cheese + back to nature's "poppy thyme cracker" + cherry tomato slice
NO. 3: portland's trimet max trains
no. 4: let's make a deal! ie wayne brady
He sings, he dances, he has a friendly face . . . what's not to like?
no. 5: steam
I knew this was rad . . . but somehow forgot. He especially likes it from the teapot and even has a hand movement for it.
The Signal Spot in Bend, OR is generously hosting a fundraiser for Abel November 17, 18 and 19, 2011. Just call or come in and ask for Mike!
I am beaten at the end of everyday.
Try to keep hope for Abel,
try to be a good wife,
try to be a good mom,
try to be a good friend,
try to keep money in the bank,
try to get Abel the best help,
try to find justice for our family,
try to protect other babies,
try to forgive myself,
try to learn to trust again,
try to believe in our future,
try to keep the house clean,
try to prepare healthy foods,
try to be patient,
try to understand when Abel gets frustrated and flings a whole bowl of food into my face,
try to lose weight,
try to get some sleep,
try to forgive my neighbors for waking Abel up EVERY DAY 15 minutes into his nap. EVERY DAY!
try to believe in our country,
try to believe in the human race,
try to save the environment,
try to form a non-profit,
try to fill out the impossible 501c3 forms,
try to advocate for safer birth,
try to do fundraisers,
try to stop trying so much.
What was I doing the first 30 years of my life? Why wasn't I training for this??? I feel so under qualified and unworthy to face this battle.
The last couple weeks, as I take a deep weary breathe and try again, Morgan Freeman's face has been popping into my head.
"GET UP. Move Faster."
Today it made me laugh when I remembered what it was from, anyone else remember?
Robin Hood:Prince of Thieves. haha I have not seen that movie in 20 years!
Maybe life has been trying to train me.
Maybe I am still training now.
Maybe Abel does not need to have a perfect mom.
Maybe he needs to see his mom Keep Getting Back Up and learning to Move Faster.
Complete with Christian Slater. Epic 1990s style.
hahaha
I marvel everyday at how green, creative and new everything is here. Abel and I soak it in while we walk all over the city. I did not realize how parched and dry that part of me was. I feel a little more inspired, a little more at home, a little more at peace as the days go by.
Abel loves to talk to people that cross our path. They laugh and smile or stop and chat. Two people on the train said that they would pray for him. One at mass and one at mosque. It reminded me of the old woman that came to our yardsale who said she would remember him in her morning prayers. She was wearing beautiful indian jewlery and she had wisdom in her eyes from a hard life well lived. I knew she would remember Abel just like I still remember her now. It is comforting to me to imagine all the little beams of faith shining up for Abel. Faith that is bigger than the hard, judgemental religion I have been surrounded by. Just people expressing their infinite hope in life in the way that spoke to them.
So everyday I muse and grow and heal. This is a place for me to remember and share what life showed me as I walked.
Yesterday, Abel and I stopped at a Museum's Kids Day while exploring the city with new friends. The older kids were coloring and playing with gadgets. Abel was excitedly doing his little jig-skip-step that we both think is so funny. A woman working there was watching and asked me how old Abel was. I happily replied "a year and a half!" while I struggled to help him stand up and not drop my purse. The woman followed me another step and paused. Than she blurted out, "He has Downs Syndrome?"
There are a hundred things that I should have said . . . "No." was the only one that I could get out. I was so proud of Abel for trying to push the fog horn just like the big kids, for making the old man on the train laugh, for pointing at all the things I was talking to him about as we walked to meet our friends. She stole all those little victories from me. I did not see this one coming. I cling to Abel's personality and cognitive development like a life raft. To have someone attack that part of him-that miraculously unique, amazing, brilliant, part of him- was a low blow. The month before, it was at a coffee shop. The lady in line behind us stared at Abel for a while and than asked if he was a preemie. Startled, I said "no." and turned away. Unconvinced she started to point out why she asked and all I could do was just walk away.
I try to be prepared for people to ask why he doesn't walk, why he cannot sit up, why his head is always tilted . . . I see people look at him, trying to place what is different. Several times a day someone or another says "Oh my goodness! He looks tired!!" I know they mean well but it still stings. What am I suppose to say? So, I agree and walk away. I can't say, "no, he is not tired. He was injured at his birth and that caused brain damage that has affected his ability to control his muscles and left him with a lifelong disability. Thank you, we were having such a good time that I had almost forgotten about that horrific event." No, I don't say that because it would be rude . . .
People are drawn to Abel. I hope they always will be. I like to think it is not only because of a disability but that they too see that he has a strong and beautiful spirit. I want to use these moments to educate others and prevent them from causing someone else additional pain. For now, all I can manage to do is walk away. I hope I can learn to be a better example for Abel. In the meantime, please remember that when you are pointing out the lack in others, it is pointing out the lack in you.
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