My views on abortion have changed since leading into adulthood and becoming a mother, especially after being faced with decision of bringing a child who would be medically fragile into the world.
While in my college courses years ago we discussed the topic quite often since I was leading into a career into the medical field. I often thought about if I was faced with the decision to abort because my baby had a major medical condition and most likely would not live, especially if it meant the child would have numerous medical procedures. But I had learned over the years that doctors are not always right, and they don't hold a magical book that can determine the exact date of expiration on a life.
When I walked into your office I was scared, overwhelmed and in medical mode as I watched the tech scan over my plump baby bump. I could see the blood flow was wrong in his tiny heart. But I also felt him roll around and I seen his tiny facial profile.
When you walked in you talked directly to the Ultra sound tech. Saying things like Critical Aortic Stenosis, when you smiled and said "Excuse us for speaking our "doctors jargon", I will explain fully in a minute.". Your face turned to utter surprise when I explained that I already knew what you were talking about, at which time you directed the conversation to me and explained how I was a very observant person to have seen that our 20 week fetus only had three chambers in his tiny heart.
You went on to explain that you have never seen a case this critical that did NOT turn to a condition called Hypoplastic Left Heart syndrome. That his left side of his heart that was extremely small and barely functioning would end up no longer functioning. That his Aorta was and would continue to become narrow/smaller. At this time we would have a list of options, none of which would be easy.
We could choose:
*Abortion
*Birth him and then take him home for compassionate care. (no interventions, just watch him waste away and eventually pass away.)
*3 open heart surgeries before age 4
*Heart transplant
Abortion, though, was your main focus. You continued to speak of it. Saying how this life would be hard on him. That it would be extremely hard on our family, as my husband and I were younger and we already had two younger children. You said he would have little to no quality of life. You said we should decided within the next 2 weeks because of his gestation.
I was pissed, and hurt at such a gesture. Here we were receiving life changing news and you were telling me I could just end it all with a simple decision of ending his life. A child that I had carried now for 20 weeks. I had felt him kick, seen pictures of his little face. There were options to help him sustain life and you just wanted to get rid of him. You gave us no hope, as you said most of these kids don't make it out of the hospital, and most never make it to Kindergarten.
3 years later I have begun to understand why you stated these things. Why you continued to bring it up, and why you seemed to be angered at the thought of us not choosing it.
I understand that at your place of work you are faced daily with the faces of grieving parents. Parents you have just told devastating news to. Parents wanting to hold onto their bundle of joy for as long as they can. Consumed with their emotions and "selfishness" of wanting to keep their child alive. Because who wants to face the scary part that most people never experience? I am sure you thought about the tax dollars "going to waste" for a child that wont make it anyways. You were not properly educated on the new technology and interventions that have been keeping children like our son alive now for the past 20 + years.
You were thinking of another young couple taking on to much, and another child being placed in the system because they cannot properly maintain care for such a fragile child.
I understand.
Your words stick with me daily.
When he came out of his first open heart surgery hooked to life support, hanging on the edge of life and death. I seen heartache.
When I seen his enlarged heart beating through his chest cavity because he was to swollen and unstable for his chest to be closed for 2 weeks. I seen hardship.
When I seen him cry tears but heard no sound because of his breathing tube. I second guessed my decision, just like you did.
When we made the decision to have him moved to a more equipped facility out of state and I was separated from my husband and children for four months. I stood by his side every day.
When I seen him smile for the first time, I seen quality of life in the form of happiness.
I watch him use his walker through our house, as he smiles and yells "I luu you mommy" I hear quality of life and see it with my eyes.
Though he had and has many daily struggles, he perseveres. He smiles daily, he laughs big belly laughs. He gives the biggest hugs, and makes our family complete.
You said most of these kids don't make it to Kindergarten, and we have seen that evident many times, sadly. BUT their lives where worth every second. Their smiles will forever be remembered. The memories they made with their parents will also.
Next week our sweet boy will be starting in the Preschool near our home. I will be handing him off again, but in the best shape he has ever been in. We know the reality of losing him at a moments notice, we have come close many times, but I know we made the best decision for him when we chose to fight. Any second we have or have had with him has been worth it, maybe not always the easiest, but ALWAYS worth it.
Even with his Critical Congenital Heart defect, mixed with the Hypoxic Ischemic Brain injury that occurred during his first surgery (that caused him to have Cerebral Palsy), he still continues to amaze doctors with his continual progress.
This type of life isnt everyones best choice, and we understand that. We also understand that it is your duty as a health proffessional to give us all options (even the uneasy ones), but our choice was best for us. I hope that one day you will have the pleasure to meet our sweet boy, and that you can be better acquainted with survival rates of children like him in the near future.
When we were 20 weeks along with our 3rd pregnancy we went in for our normal anatomy scan, or what others associate with the ultra sound to find out the sex of your baby. Whether you were buying blue or pink soft onesies, hair bows or bow ties.
But for us, it was a day that changed us forever.
At our 20 week anatomy scan they couldnt get a good look at babies heart, though I could only see three chambers each time it danced across the screen. We were sent for fetal echo in hopes that it was "nothing" and we were just being overly cautious. We only wish this was the case.
Our boy was diagnosed with a Critical Congenital Heart defect.
We were told MANY things that day.
Like his left side was extremely small and barely working (his heart that is).
His Aorta was small and narrrow.
He may not survive.
His life would be hard and have little to no quality.
We could choose abortion. Abortion was an option. If we chose abortion it needed to happen somewhat quickly because of his fetal gestation. ETC ETC. (I mentioned this multiple times because it was mentioned multiple times!!).
This would be a huge change and challenge to our little family with my husband and I being somewhat younger and having two small children already.
We would have a few options. Abortion, give birth to him and take him home to pass, three open heart surgeries before 3-4 years old, or heart transplant.
Because we didnt choose abortion this hospital only offered to do the three surgeries or compassionate care/hospice.
We were told the hospital was great and could handle it.
He could have multiple developmental delays.
It could be a rocky course of recovery because every child is different.
Become accustomed to PICC lines, IV's, heavy narcotics, breathing tubes/machines, Oxygen Saturations, Blood pressure.
He could pass at anytime, and most of these kids dont make it to school age.
We would go home with machines, daily phone calls to check weight and Oxygen.
And so much more.
There is alot we werent told. Alot we werent prepared for.
They didnt say that we would learn to wear an array of masks to make it through the day.
They didnt say that we would learn the hospital better than some of the staff.
They didnt say that while its challenging, we would learn to balance hospital life with home life/time with our other two children.
They never mentioned ECMO (life support) as a possibility. But it happened.
They never mentioned possibility of brain bleed or brain damage occurring that could change his life and make for more challenges.
They didnt say that we could become accustomed to all of this and more.
They didnt say he would make it.
They didnt say I would sit by his bed and beg for his pain to go away, even if it meant me telling him he could move on past this world if it was to much.
Out of everything, they didnt say that we would learn to celebrate EVERY bit of progress. That we would learn to juggle better than any circus clown and do it with a smile on our faces most days.
They never mentioned that we were strong enough for this life. (We still break at times, what parent wouldnt.)
They never said we would learn to love through any pain that came.
They didnt say he would have an infectious smile that could make even the most stone cold person light up.
That he would smile even through his biggest struggles.
That he WOULD start school one day, and the days in the hospital would just seem like a dream at times.
Often times, late at night, I cant sleep. I feel an extreme urge to write down whats on my mind.
I guess this urge came from years ago when my therapists gave me a list of ways to cope with my depression and anxiety. It has saved me more than once. Sometimes just jotting down what keeps playing in my mind can help me feel a sense of relief. Like its not just trapped in my head. Its out on paper, and its real, and I can share it with others if I choose.
The past few days have been hard, I cant pretend they haven't. When its quiet, and I am just staring at my sweet boy playing so innocently in the floor with his toys. His hair swept over to the side and his comfy jammies. And his smile, oh his smile just reaches me in a wave of emotion. This time three years ago Waylon was hooked to a multitude of machines to keep him alive. His body was unstable, he needed a ventilator to breath, an umbilical line to pump him full of meds to keep the hole in his heart open. The only thing truly keeping his heart as stable as it was, was that medication. He was heavily sedated because he just couldn't tolerate sound, light, touch. His numbers would drop dangerously low, which was another reason for the ventilator because he continued to stop breathing.
Even though this was three years ago, the memory and emotions are still so raw. Looking at him happy makes me happy, and emotional at the same time, because I know what he came from. The struggle and pain he endured to get to this place.
I have went back to this journal entry often this past few days and felt it was time to share because I feel like others could understand, I get comfort from that. Knowing that I am not alone in this journey with my child is both sad and relieving at the same time.
Here is my entry from months ago, when I slept no more than 3 hours in a night for 2 weeks.
I hate the entity called CHD.
The dark demon that holds our child's tiny lives in it's hands.
Engulfing our entire family into it like a raging fire.
Beating down doors, staring you in the face, no where to go. Its not an addict on the street
you can walk away from and deny.
It covers you in its "comfort" blanket every day that you have with your warrior, leaving you wondering "when?" its going to strip them away from you.
Having you on edge leaving you with vivid nightmares of what could come, and what others have faced.
It takes you down quicker than any storm could and destroys any picture you had of your child when you first seen that positive on that pregnancy test.
Its a ROTTEN thing!
A COWARD, hiding behind deceiving smiles , slow development and failure to thrive diagnosis.
The only visible hell left behind is faint scars, blue lips and tiny blue fingers/toes.
Scars that are uplifted, used as empowerment. Showing their endearment, their strength, not their pain.
While that entity just tick, tick, ticks away.
That bomb waiting to blow.
Each second precious, but the future feared.
Will he live???
Will he beat this????
We will fight, sutures, scalpel, and doctorates in hand.
Besides, what else can we do, when the entity has our child in hand and our family held hostage?
One things for certain, its all been worth it.
Though the seasons change, that will remain the same.
Its okay to have fear.
Its when you become so overly consumed and no longer productive, that you need to re- evaluate.
Down times happen. Scary thoughts creep up.
There is NO manual for this life.
I may be scared, but its not defining me. I'm taking it one day, and sometimes minute, at a time.
As long as he is fighting, I am too!!
All of this so true. I will say it again, this life isn't easy, but it is worth it. He is worth it!
I had contemplated writing this for a while. The words danced in my head daily as I scrolled through my Facebook newsfeed.
I know for so many this will hit home, and for some it may seem like I am attacking them. This is not my intent, first and foremost. I just want to articulate my families feelings on this subject and help others empathize with us. This isnt towards any ONE person in particular as I see this from friends, family, aquaintences etc.
Growing up we used certain words to get point across about how stupid something or someone was, we sometimes used these words to also hurt people.
Retarded, cripple, limpy, cross eye, slow,etc.
I hate even typing these words now.
I hate it because my child fits into these ill fitting categories.
Born with a critical congenital heart defect, our youngest underwent his first open heart surgery at just 7 days old. He came out on life support, and during surgery he had a brain bleed and a Hypoxic ischemic brain injury (he went without adequate oxygen for an unknown amount of time). Because of all of this our Waylon is left with a diagnosis of Hypotonic Cerebral Palsy with Hemiplegia. He has a weak left side due to the brain injury and bleeds, his muscles can be both tight and weak. He didnt feed by mouth until he was a year old because he just couldnt swallow properly and his body was overworked just trying to survive due to his half of a heart.
Waylon has what appears to be a slight limp due to his weak left side and his muscle being so tight that he has a hard time straightening his leg fully. He requires braces on his ankles and legs to help him properly stand, and a walker to help him to walk. He also has a wondering left eye due to his brain damage, and is quite delayed in all areas.
Hearing people speak in reference to people like him in such a cruel way is heart breaking. I was brought up that people are people, no matter their color, beliefs or disabilities, but sometimes even my own family is not aware that their choice of wording about a situation can sometimes be quite hurtful.
I have done well to not lash out at people, partially due to the fact that just a couple of years ago I too used the r-word in reference to stupid situations (not people), and because I know that my point will not make it across to people if I run screaming at them.
I didnt understand how harmful these things were until my son came along, EVEN when they arent in reference to him.
Making others aware seems like the only solution. There are so many words that are better fitting.
When we hear people using such words in ill intent about others it only fills us with more anxiety about setting our son free into the world/general public one day. I also know that we cant change everyone, or their process, but we are our sons advocates. He is where he is now because of our advocacy for him.
If we dont stand up to this, who will?? We need help with it though. WE need others to take a stand, Waylon needs others to!
As I explained earlier to a family member, the problem with "but I wasnt saying it about him" is that its about people like Waylon. Friends of his, people that are like family in this tight nit community. Its a problem because Waylon will be old enough to understand these words one day, and one day soon he will recognize he is different. He will realize that he has certain factors that hold him back from doing things just like able body and minded people. Though we show him so much love, and show him his strengths daily we know there will be a day that he may feel less than due to his disabilities, and we know that we can not save him from everything. I also know though that if we start now, we start recruiting people to take a stand that we can lessen the blow.
He will one day understand these words used in reference to people with disabilities like his, and I fear he will become self conscious. His feelings hurt, to think that someone who says they love him, says such cruel words about people like himself. I also put it like this, as a family member if you heard someone say one of these words in reference to him or TO him, would you still feel the same? Would you still be okay with it? Or would you be pissed that someone spoke about or to him in that way? When we speak this way, our children hear it, they carry it on into their daily lives and use it in their daily language. Would you be mad if you heard some child at school called him such a word? Then why is it okay to say about someone else?
Waylon has been through so much, and he struggles daily to do "normal" things. Why cant we take a step to help lessen the blows for him in the future by no longer using these words. When they come to your lips, think of him. His smile, his fight. Help us to end it!
I'm going to be vulnerable for a bit and go into some depths I haven't really openly spoken about.
I've not been one to hide my emotional state for long. I was taught not to as a coping mechanism while in a mental hospital. Yes, you read that right. The inspirational over comer you keep up with has been in a mental hospital. I placed myself there when I was a Jr in High School.
I've struggled with depression for as long as I can remember, but I have also dealt with body image issues just as long.
As a young -thin I might add-girl, I was reminded not to eat to much because "you will get fat". Or told in my teens that I had gained a noticeable amount of weight. When I was at a health weight, the body people would kill for, it was usually because of my eating disorder. Depriving myself of food or eating a small amount then purging it.
I was noticed, attention was given, but not exactly what everyone would want. Boys and men objectified me to the point that I felt that's all I could be good for. Mans use.
I was sexually harassed not only verbally but physically from the time I was 4-5 years old until I became a teen.
I was constantly trying to please everyone, everyone but myself. I put up with disrespect from those around me just so that I would be surrounded by people. I dumbed myself down and hid in a shell more times than I can count just to satisfy others. But I hated it. i hated myself. My mind went to those scary places. How could I rid myself of this pain.
Anxiety attacks took over. Overwhelming feelings and I found that physical pain relieved my mental anguish. So at 16 I began cutting myself. The anxiety attacks would become so bad that they took over my body, harming myself was the only way I could relieve the pain. My body ached, I couldn't breath, until I cut myself. Feeling the pain from the cut and seeing blood run was the only way to relieve the emotional pain at that moment.
I hated my body so much that I often thought and talked about cutting off the fat. Yeah, it was that bad. I hated it so much that I starved it and then damaged my throat in the process of releasing food that I felt bad for eating.
When I got to the point of thinking of killing myself to relieve the pain I knew it wasn't where I was supposed to be, and I seeked help.
Psychiatric help helped me. I gained other coping mechanisms to help myself and i gained some control of my body, my mind, and my eating disorder. I was surrounded by REAL people. People who truly gave a damn without ulterior motives. They just loved me.
Though i have been off medication for a few years, I STILL struggle daily. I AM stronger than I was 10 years ago, I have had to be. I have three children depending on me. One of which no one else can truly care for the way he needs due to his medical needs.
I'm NOT the same person I was 3 years ago. I don't look at life the same. I see myself in a different light, and I see so many people around me in a different light. I no longer put myself in the spot to be every ones confidant when they feel the need, their stepping stone. I am no longer here to please others. Only my children, myself and the one man who has stood by me at every low point (my amazing husband).
Because of the new me and how hectic our life is, many people have walked away from me. I only have a SMALL hand full of people I can confide in. I am vocal about what goes on in my mind, reaching out for support and love, but still no one comes to the rescue. I guess I have gotten good at hiding the fact that I am truly struggling. Its nothing like it was a few years ago, its new, its different. Its realistic fears and stress from dealing with my sons conditions and the thought of how I CAN lose him. Stress from worrying about getting him to a competent hospital that can continue his life and quality of life, all while dealing with his limitations, day to day life with his siblings and my role as a wife.
So many have walked away that I honestly don't even try to open up to another friendship. People I cared deeply for and was close to.
Recently a close family member tried to commit suicide. I am saddened for them. I know that feeling, what runs through your mind, and that they didn't reach out to get help before leading down that road. I am happy that they didn't succeed. That they can get the help they need to get to a healthy place. I tried to reach out a few times but I don't think it stuck. I feel they were consumed with what is going on in their life right now that maybe they didn't see it, and that's okay. Ive been there when I was in my younger days. Its hard to see everything going on when your mind is locked down in a hard place.
But now I sit back and I see how many people ran to this person to check in on them, incorporated them in their plans to bring them through this rough time in their life. While I am so happy for that, they NEEDED it, it just opens my eyes more to who has been there for me recently, in my dark times. Its not many, my husband and a small handful of people. A few amazing heart moms who have called, texted or private messaged me to check in on how I am doing and how things are going, offering up an ear to listen.
No one else. It makes me think "What would it take?" What does ti take for people to care? Does it take me going completely down into that dark place where I do begin to think those dark thoughts, trying or succeeding in ending my life for people to give a shit and say how much they care?
Then I think maybe those people are no longer needed in my life. Even if they are family and old friends. Which is sad because of how close I used to be to some of them. But it shouldn't take me getting to that point for people to show they care, for them to show up, invite me into outings or a cup of coffee to help me cope with this hard time. While I could really use that, because lets face it I have alot going on, and major decisions to make again. I also want genuine people in my life, not someone who feels obligated to be here because I am in a rough spot. I know I will make it through, but a few good friends who care could be beneficial too.
I know in the end I have a few quality people in my life who are there when I need them to be, helping to pick me up when I am enduring the rough spots on this journey called life. For them, I am thankful.
Recently our world went a bit topsy tirvy again.
I had strong suspicions for a long time that Waylon had much more going on than just "developmental delay". His muscles were still spastic, despite our efforts of stretching him.
After getting ahold of his records I found that he had endured a brain injury during his first open heart surgery at our local hospital. We were NEVER told about this. I brought it up to his neurologist who described parts of Waylons brain as dead due to the injury/damage.
I did the only thing I knew I could do, the same thing I did when we received the diagnosis of his heart defect..... RESEARCHED!!
I had a very hard time finding heart parents whose child had experienced a Hypoxic Ischemic Brain injury, so I had nothing to go on. Nothing but symptoms. those symptoms lead me to a page called CHASA, Childrens Hemiplegia & Stroke Association. Waylon fit every part of this diagnosis (Hemiplegia), and when I brought it up to his therapists and doctors they totally agreed that something else was going on and it sounded like this.
Hemiplegia is a form of Cerebral Palsy. One side of the child is quite weak, their muscles can be spastic (tight), they often times need leg braces to help with stability and ankle turn in, along with other things like delays.
I felt I was onto something and that I needed to push for answers! Since we didnt see neuro for another year I went to the cardiologist and asked about having him referred for an MRI.
After a couple of weeks waiting for the results the neurologist called me. She seemed a bit agitated that I had went to someone else for this. She explained that Waylons MRI showed that his brain is not normal (we pretty much knew this). She said that the only changes they seen (compared to the MRI from 2 years ago) was that his ventricles are enlarged and the spot of Hydrocephalus (Spot within the brain that is filled with Cerebral Spinal Fluid, most likely due to brain damage) was now bigger than it was 2 years ago.
I mentioned the Hemiplegia and how I felt physically he met all of the "requirements", and was met with "I have hemiplegia in my notes, he HAS hemiplegia". This was new to me! We had never been told this! It was never mentioned, not even when I told her that we didnt know about the brain injury.
I was a in a bit of shock, and quite pissed that this information was withheld from us. Her act of kindness and sincerity at the last visit when finding that we were never told of the brain injury, felt like just that, an act.
She continued to go on about how if I only needed a diagnosis then she could have just given us one, it wasnt a "big deal", so she said. While typing out the diagnosis she would be sending to his cardiologist (per my request, because she gets stuff done!), she read everything off to me. Hypotonic Cerebral Palsy WITH Hemiplegia, Hydrocephalus, Hypoxic Ischemic Encephalopathy. I remained calm as she went on about the Hydrocephalus, and how she isnt concerned about it because his Eye doctor closely monitors him and how she wanted me to call her and see if she has noticed pressure at the recent visit. We have to keep up with the pressure to make sure the Hydrocephalus isnt growing and need intervention in the form of a shunt.
WAIT, WHAT?! The eye doctor will keep up with this? The same eye doctor that we missed a visit to last year and didnt see for 12 months? The same one who DOESNT know about these diagnosis, just like no one else on his care team because its "in my notes". How the hell can you diagnose a child and NOT tell the care team, let alone the childs parents?!?!
I kept calm while on the phone, but as soon as I hung up it all hit me. The only thing my mind could muster together was "My child has Cerebral Palsy", over and over and over.
I broke.
My heart broke.
My stomach was in knots.
As tears flowed I thought "where do we go from here". What would be our next step? What do we do now? What if my child never walks? (That question has played over and over in my brain before this diagnosis ever came along, and I never quite knew why). We obviously have to search for care somewhere else, that is a given. We can no longer trust this "team" to give him what he needs. A diagnosis that should have been shared with ALL of his team so that he could receive everything he needed, was not. Trust is gone.
I am so glad that we have our sons cardiologist on our side, but I still feel like my husband and I are standing in a dark room holding out hands searching for a light. Searching for the best decision for our son again. Another life threatening diagnosis (hydrocephalus) piled on top of us, and we cant find the exit, because there isnt one. We just have to deal. We have to pick ourselves up, push back fear and dig into searching for the best care.
Its not so simple though. We cant place our fingers on our state map and say "Here is good". We have learned early on that doctors and centers are NOT created equal, and while one center may excel in one diagnosis, it isnt so good in another. We also cant JUST go to a center that does neuro and doesnt have a good pediatric cardiac center. Why? Because anytime Waylon has anything done he has to have a peds cardiac team there too, to ensure that IF something went funny with his heart he would be safe (and so much more). So we are left with trying to decide between his current surgical site, Motts childrens hospital in Ann Arbor Michigan, who is absolutely amazing with Waylon. They know him, they can care for him the way he needs without question, we TRUST them. But neuro side they are rated #23, while Cincinatti childrens is closer to us, and rated #6 in neurology. BUT, they arent ranked as high in cardiac, and have been falling in numbers over the past few years.
So you kind of see our dilemma. Its scary. This isnt a small cold for a typical child. Its a child with half of a heart, a child with fluid on his brain that seems to be growing. So much plays into a decision, its not cut and dry. Its scary, and it could be life or death.
I am so scared of making the wrong decision. I dont want things to end like they did at our local hospital. And though we were lied to there, I still feel guilt for having him there. It was not our fault, but sometimes I feel that way. As any good mother would who is trying to give her critical child the best.
Now, what does this all mean for Waylon. Well, some of it we dont really know. Most of it will be a "time will tell" scenario. He could need assistance for the rest of his life to walk, he could need surgery on his spastic left leg in order to walk properly if we cant get it straightened out. He could need his braces for a LONG time. He could need surgery to place a shunt to drain the Cerebral spinal fluid (this is highly likely, especially since he has enlarged ventricles, which usually means there is an obstruction). We also dont know if he will progress well for a while and then stop, and that be where he is the rest of his life. Again, up in the air. So we have to take in all in strides.
What I DO know this means for Waylon: He is incredibly loved, no matter what! We will continue to push him and to push for him to receive what he needs to have the best quality of life that he can. We will continue to take on anyone who isnt doing what we feel is best for him, even if it means going behind their back and going to someone who better suits him. We will FIGHT for him, as we always have. I know that he is AMAZING. He shows me his will and fight everyday. He shows me how smart he is. His strength gives me encouragement, especially on the hard days.
I am so glad that I trusted my gut and pushed for answers for him, even though they have been hard to hear and scary, they are being taken care of like they should be!
