Loving Life With Full Trisomy 18 - Edwards Syndrome - Helping Families with Prenatal and Postnatal Diagnosis of Trisomy 18, 13, and Related Chromosome Disorders - Dealing with Ethics, Genetics, and Related Medical and Health Issues
Rebekah has scoliosis, and it seems to be getting progressively worse. We go to a Shriners Hospital to follow its progression and they have been reluctant to do many interventions. But each x-ray has been getting steadily worse, so they agreed it was time to do something to try to slow down the progression. The danger of scoliosis, especially an 'S' curve scoliosis, is that it will eventually crowd the heart and one lung restricting growth and obviously causing problems. We are a long way from that point, but it seems evident that we will eventually get there. The doctor would like to slow down the growth as much as possible so that we can hold off on any kind of surgery until she is a teenager. Once you fuse the spine, put rods in place, or any of the other surgical methods for correcting bad scoliosis, you stunt growth so that the patient can really no longer grow. While there are some nonsurgical casting procedures, they are not considered as effective for 'S' curve scoliosis as for 'C' curve scoliosis, especially in patients with a chromosome disorder.
There are many types of scoliosis braces. The original plan was to get a hard shell TLSO (Thoraco-Lumbo-Sacral-Orthosis brace, or also known as a Boston brace). But because the corrective pressure put on her during the casting did not result in a >50% improvement, we went with a TLSO that has more padding and less hard plastic and will be a little more breathable. The doctor is hoping it will encourage us to use it more often and therefore be more effective in the long term. But we have to try to balance maintaining her spinal curve with improving her development. In any case, the braces hinder her development by limiting her movement and adding a lot of weight to her already weak muscles.
Here is a picture story of the process of getting fitted for a TLSO, which includes being plastered in a cast.
9/21/11 S Curve Measurements: Top - 27 degrees, Bottom - 29 degrees
12/14/11 S Curve Measurements: Top - 33 degrees, Bottom - 30 degrees
Getting ready for the casting. First a tight body shirt is placed on the patient. The shirt has no obvious seams to cause irritation and the same kind of shirt is worn under the TLSO to help prevent breakdown of the skin.
Rebekah was placed on a crazy contraption and balanced on about a 2 inch wide 'sling'. Then warm, wet pieces of plaster were wrapped around her body from below the arm pits to right below the hip bones. Then they were smoothed down. Rebekah seemed in a trance and loved the attention, proprioceptive input, and the warmth. They stated she was, by far, the easiest 2 year old they had done!
Then her feet are put in straps at one end and her head put into a sling of sorts. They applied pressure to 3 different points in order to compensate for and correct the scoliosis. Then they 'crank' the contraption and stretch her out like the medieval 'rack' used in torture chambers. (It didn't really hurt her, just gave her a nice stretch. She actually didn't complain during the whole process; it probably felt really good on her back.) She was kept in this position for about 10 minutes until the plaster was hardened.
Once hardened, she was taken out and carried to x-ray to see how well the correction worked.
Here she is getting the x-ray done. The pins show the sections where the correction pressure points were placed.
Here is the x-ray with the cast. From my untrained eye, it seemed tons better than the previous x-rays. But it didn't improve her scoliosis the desired 50% or better goal. The S curve was now about 117 degrees on the top and 21 degrees on the bottom. The bottom curve was much harder to correct and clearly is bone growth, not weak muscle as previously thought by the doctors during earlier x-rays. This means we will not be able to correct the curve, but we will try to slow down the progression so that it does not get real bad before puberty, the preferred time for any surgical interventions since growth of the spine can be stunted once surgery is performed. Even the growing rods only have a certain amount of growth capability built into them. All of this was disappointing to hear. But we are committed to doing what we can to improve Rebekah's condition without greatly hindering her developmental growth opportunities. The trick is to figure out how much use of the brace is necessary to slow the growth down while we continue to see developmental gains and encourage Rebekah to sit on her own and move and roll around. A brace would certainly limit her movement and exploration at this critical stage of her development.
With the x-rays over, the plaster cast can now be removed. A little hand saw is used and it is cut in a straight line that was drawn on her during the casting process. Right under the line is a heavy weight strip of material that prevents the saw from going into her skin.
Then a tool is used to separate the cast so we can pull her out. The cast needs to remain intact so it can be used to mold the new TLSO.
A few weeks later the base TLSO was completed. I forgot my camera the day of the fitting, but basically they put the tight white undershirt on like in the picture. The shell was placed on Rebekah and cut to fit her under the arms, far enough below the trach not to obstruct it, and high enough at the hips to allow her to sit in the TLSO. Then it was drilled to add airholes and the straps were added to it.
Here is the front of the completed TLSO. The round hole is cut for her g-tube so that the shell doesn't need to be removed for each feeding. The 3 straps are pulled so that the TLSO is tight enough to 'not move', but not so tight that it hinders breathing. We undo the lower straps during feeding just so we don't have so much pressure on her little tummy that it causes her to vomit.
The back goes all the way down past the sacram, but does not go too far to hinder sitting. The white sections with the holes are in areas where there are no pressure points. This adds a little more air circulation and comfort to the TLSO. However, if the casting had improved her scoliosis more, they would have stayed with a hard shell brace that would ultimately be more effective (but less comfortable). The lack of improvement is because the scoliosis is based more on hard bone curvature versus a muscular cause to the curve which is more 'correctable' over time.
So for anyone facing a casting scenario for your child's scoliosis, this should give you an idea of what you might expect. Although the process was time-consuming, it wasn't difficult on Rebekah. She rather enjoyed the warmth and confinement of the plaster session. She didn't care for the brace the first week or two and seemed to hold her breath. But we never really got much out of her than a little whining. She is now doing well in it, and can wear it pretty much all the time with no issues with her skin. We take it off for a few hours here and there for therapy and play time. It is supposed to be worn like 23 hours per day, but we have to balance physical development with reducing the curve progression. We will have to go through the process probably about once every 4 months or so, depending on her rate of growth. If her curve remains stable from the last uncasted x-ray statistics, then we will know we have a good plan in place.
Michael and I made plans to attend our first ever Republican Party even - a meet and greet dinner with Senator Santorum at a local restaurant. The thought came to me about an hour before we had to leave that I should give him a note with a picture of us with him from last year and an invitation to his wife to join our online community. Here's my short note. I included several of Rebekah's info cards and a picture of our family.
Dear Mr. Santorum,
We had the pleasure of meeting you at the SOFT Conference last summer in Chicago!
A group of us have started a nonprofit called Trisomy Advocacy Group – a group meant to educate and help parents advocate for their trisomy 18, 13, and any other trisomies not currently represented by a national organization. Like you, we have had our share of disappointing encounters with the medical community, despite our full trisomy 18 daughter being 32 months old. We would love to talk to Karen or you about it! We would also love to give Karen some trisomy support. We have a great moms group on facebook, and she could even join under a different name if she didn’t want the attention. I cannot tell you how much we have learned from our moms group and how it has helped us to be better advocates. God bless! We will be voting for you!
Michael and Susan Budd
I held a folded paper in my hand waiting for the opportunity to slip it into his hand when I had my chance to meet him as he made his way through the room greeting everyone there. We arrived 40 minutes before it was scheduled to start - good thing as he started speaking only a few minutes later. I would have to wait until after his speech to get my moment.
As I struggled admist the crowd to see Santorum as he spoke, I can honestly say I felt an amazing presence in the room. I believe this man to be a man of character, speaking words of truth - someone who can bring integrity back to the White House. There is no candidate that I agree with 100% on every issue, but I would take someone who I agree with on 90% of the topics and who I know would be true to their word.
My excitement suddenly grew though! I didn't expect to see his wife, Karen, standing next to him. For some unexplained reason, my eyes suddenly welled up with tears as I felt an inexplicable bond with this woman. The letter I wrote was really intended for Karen, but I didn't dream I would see her at this event since Rick was making his grassroots tour across the Upstate area of SC and visiting location after location every few hours. I was so excited! I could now give the letter to Karen directly!
The speech finished and I continued to push my way through the crowd waiting for my opportunity to get to the Senator. But as I got closer, I saw Karen was no longer by his side! My heart dropped. I asked a ady who had been standing there if she knew where Karen went. She said she heard her saying something about the bathroom.
So I snuck off to the bathroom to 'corner' her despite Michael's urgings to give her some privacy. Besides her, that bathroom was empty! I patiently waited until she came out of the bathroom stall and washed her hands, then I made my move! I quickly introduced myself as a fellow trisomy 18 mom, my heart welling with a pride that only another trisomy mom would understand. I gave her the letter and quickly said a few words about our Trisomy Advocacy Group, Trisomy 18 Mommies group, and my family.
Karen started asking me questions and took a glance at the letter and my info card with Rebekah's picture. She recognized Rebekah! She said, "You have a blog, don't you? It's beautiful, I loved it!" My heart burst with pride and I suddenly had the urge to run home and add to my long-neglected blog! My writer's block had been broken! We chatted some more about advocacy and these words flowed from her mouth, "I have such a passion for this! [referring to trisomy 18 advocacy] I am so tired of doctors telling us our children are 'incompatible with life'."
She asked me about Rebekah's story. How did it start? What did the doctors do/say? What did we do with Rebekah? We chatted for long enough in the bathroom that someone from their security group finally knocked on the door, gave me an evil eye, and asked if she was okay. Before I could say a word, she said everything was fine. She gave me a hug and we left the bathroom. I paused her so Michael could snap a picture of us together. Then her son, Dan, gently told his mother they had to move on to the next location and were getting ready to leave. Michael just looked at me disbelieving I actually DID have the guts to stop her in the bathroom after all!
Let me tell you, I love this woman! She would be such a great First Lady for our country. She is as down-to-earth as Rick, not afraid to shake hands with those around her, and has such a kind heart. I am most honored to meet her, even though I thought it meant I missed my opportunity to speak with her husband. But she had my letter! So I knew he would at least get to see the picture from last summer of him with Rebekah, Michael, and I.
But my evening wasn't finished! I made my way across the room to our table, and I squeezed next to Senator Santorum as he was heading out a side exit door. I quickly stuck out my hand, and reminded him that we had met at the SOFT conference in Chicago last July. He gave me a hug, and asked about our daughter. He, too, gets my vote for the White House!
Before Rebekah was born, we were told many things about what to expect because of her diagnosis of Trisomy 18. None of them were positive. It went beyond describing her as 'incompatible with life'. At one point when asking how far should we go to help her, we were told to save our money because we have four boys to send to college. When requesting a caesarian section in case of distress, we were told no, that it was too dangerous to me (the mother) and that trying to help a child like Rebekah was not why that person became a doctor. When exploring how best to address Rebekah's early blue spells and apnea and looking at the option of a tracheostomy, we were told that we would regret our decision a year down the road. When asked for an explanation of Rebekah's brain MRI, we were told that Rebekah is noncommunicative and may develop a little bit, but will then start regressing and basically be a vegetable, so we need to stop doing to her and start thinking about how to just make her comfortable.
All of these comments and opinions were based on a false assumption... the assumption that Rebekah's 'quality of life' would be or is poor and that her existence negatively affects our family.
What is 'quality of life'?
a term used to evaulate the general well-being of individuals (subjective well-being)
what makes life worth living
the extent to which people's 'happiness requirements' are met
I like one definition from grdc.org: Quality of Life is the degree to which a person enjoys the important possibilities of his/her life. Possibilities result from the opportunities and limitations each person has in his/her life and reflect the interaction of personal and environmental factors. Enjoyment has two components: the experience of satisfaction and the possession or achievement of some characteristic, as illustrated by the expression: "She enjoys good health." Three major life domains are identified: Being, Belonging, and Becoming.
Rebekah had an appt last week with her Developmental Pediatrician. His name is Dr. Desmond Kelly and he is such a compassionate and understanding doctor. We updated him on all the new things Rebekah has started doing in the last 6 months.
He had this to say about Rebekah:
She seems to be genuinely happy.
She explores her environment.
She entertains herself.
She has self-esteem and looks pleased when she accomplishes a task.
Her highest area of development is her social skills.
She recognizes and reacts positively to her family.
I said to him, "Wouldn't that constitute a good 'quality of life'?"
His response was agreement. "She obviously loves her family and brings you great joy. That is what it is all about."
How well stated! If only more doctors would look at 'quality of life' with the same view! And if you go back to the definitions of quality of life - I think Rebekah has mastered all the areas from her view: well-being, happiness, being, belonging, becoming, loving. She is, to us, all that God meant her to be. And I would say her quality of life is better than most people in the world. Even more importantly, she makes OUR quality of life better too.
The irony of pro-life/pro-choice in politics ends up in this generalization -
The Republicans are predominantly pro-life, but do support death penalty and don't support the programs that would be necessary to help those born with conditions requiring long-term care (in other words - people that won't be productive tax-paying citizens). So let's save all the pre-term and unwanted babies, but do nothing to help them...
The democrats are pro-abortion (yeah, yeah you can say pro-choice if you want to), but don't support death penalty and do support programs that help those born with conditions requiring long-term care and even support programs for a percentage of people out there that just don't want to be 'productive members of society'.
So one keeps babies alive but doesn't support a lot of funding for helping them, one supports killing babies, but entitles everyone to services. Yes, this is a generalization! I obviously don't think it's quite so black and white, but I find it ironic none the less!
There is one republican politian (Rick Santorum) who 'gets' the value of all lives. The Santorums have dealt with infant loss of their son Gabriel (Letters to Gabriel) and currently have a 3 year old trisomy 18 girl named Bella.
At first, Santorum was emotionally detached from his disabled daughter but, when she faced her own battle for life, he suddenly realized, “This child…can do nothing but love me.”
Santorum observed, “That’s me with the (Heavenly) Father—I am so profoundly disabled in His eyes.”
The picture of Senator Santorum posing with Chloe Kondrich (a Down's Syndrome child - trisomy 21) says more than words ever could. His broad grin shows that he has come to realize the worth of every human life, no matter what challenges that life may face. (from Disabled Children Have So Much To Teach Us)
I am so grateful for experiencing the joy of having Rebekah. And, although I may not agree with all of his politics, I do believe that he would compassionately protect rights and services for children like Rebekah (even though she will most likely never be a productive member of society). I think he will be compassionate toward all people, because he has come to realize what all of us with special needs children realize...that each life is valuable. And he is so right in observing that, in God's eyes, we are all profoundly disabled.
As little as 2-3 years ago, there were very few resources online to help families faced with the diagnosis of trisomy 18/13. There were even fewer active resources that helped CONNECT families of LIVING children. While I was pregnant with a prenatal diagnosis of trisomy 18, I needed that hope and I needed to talk to 'experienced' trisomy families so I could educate and prepare myself. It was so hard to find living kids. So I started a group called Trisomy 18 Mommies* on facebook to connect all of us, no matter where we were in the trisomy journey, and suddenly I started finding trisomy families, many with living kids that provided me with so much hope! Online, the trisomy families share fears, milestones, illnesses, frustrations, tears, joys, friendship, knowledge, and grief. We share things our friends and families just don't understand, because they are not on the same Journey.
I have a very special bond with one family in particular - the Adamyks. Jeannette and I found each other on facebook as we were both beginning this trisomy journey. Jeannette and I quickly started sharing more than just the trisomy journey, we started sharing life together. The Adamyk's son, Caleb, was born a month before Rebekah and also with full trisomy 18. Jeannette and I may have developed a strong bond, but I always felt like Rebekah and Caleb were kindred spirits too. Caleb is the 'groom' in Rebekah's 'wedding' pictures, and they look a lot alike and share many mannerisms.
Caleb went to be with Jesus on 8/29/11. I have to be honest, I have had a very rough time this past month. I haven't been interested in my normal activities, it is a struggle to get through the days, and I have been having bad dreams and anxiety. I have wanted so much to blog about Caleb's funeral and my feelings through this grieving process, yet I still cannot put it into comprensible words. I know my pain isn't anywhere near that of Jeannette and her family. Yet my pain is enough that it has been debilitating. Oh how I hate that one of my best friends has to go through this part of the 'journey'... and I hate that any of us have to even think about facing it one day. But through our friendship, and by sharing this journey with Jeannette, I have seen the depth of her love, the depth of her commitment, the extent to which she would go to help her son, and how to gracefully and lovingly one can face the worse nightmare of any mother - the death of your child. The pain and suffering doesn't negate the joy and blessing of having a miracle child that defies the odds. It doesn't make us regret choosing life.
Caleb's legacy and what he means to the trisomy community:
Caleb had the most beautiful smile that melts everyone's heart. He showed that having a special child could be full of happy moments.
He gave us hope to not give up on our children, but to fight for them.
Caleb became an encouragement to other families faced with the same diagnosis, and the Adamyks showed us how to be advocates for our children.
Caleb proved that life is more than what you accomplish by worldly standards. Trisomy 18 children are worth fighting for. Life isn't about striving for perfection or success, but about loving and living, and enjoying each day.
Caleb helped bring people closer to God and gave us a glimpse of what unconditional love means - suffering without complaint while loving those around us, just as Jesus did.
Before Caleb went to the hospital in what would be his last days, Steven Adamyk twirled him around outside in the rain, just enjoying a special moment with his special son. This beautiful moment reminds us that "Life isn't about waiting for the storm to pass, it's about dancing in the rain."
Jer 29:11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Although it is hard for me to see and accept this now, I know in my heart its true and I am praying daily for the Adamyks and for all my trisomy friends that have lost their child.
Caleb lived in Ocala, FL. Ocala Star Banner has been following Caleb's story since birth. Here are the links to some of the beautiful pieces done on him:
Weak and wounded sinner
Lost and left to die
O, raise your head, for love is passing by
Come to Jesus
Come to Jesus
Come to Jesus and live!
Now your burden's lifted
And carried far away
And precious blood has washed away the stain, so
Sing to Jesus
Sing to Jesus
Sing to Jesus and live!
And like a newborn baby
Don't be afraid to crawl
And remember when you walk
Sometimes we fall...so
Fall on Jesus
Fall on Jesus
Fall on Jesus and live!
Sometimes the way is lonely
And steep and filled with pain
So if your sky is dark and pours the rain, then
Cry to Jesus
Cry to Jesus
Cry to Jesus and live!
O, and when the love spills over
And music fills the night
And when you can't contain your joy inside, then
Dance for Jesus
Dance for Jesus
Dance for Jesus and live!
And with your final heartbeat
Kiss the world goodbye
Then go in peace, and laugh on Glory's side, and
Fly to Jesus
Fly to Jesus
Fly to Jesus and live!
Rest in Peace, Sweet Caleb. We love and miss you so much!!
*Trisomy 18 Mommies is one of many online resources available to families wherever they are in the trisomy journey. We currently have about 540 members at all different points in 'the journey'. Contrary to the name, the group is also for dads, family members, etc and encompasses families facing trisomy 18, 13 or any similar genetic disorder considered 'incompatible with life'. However, Facebook will not let us change the group name to better reflect the composition of the group. :-) If you are facing a diagnosis of trisomy, already have a trisomy child, or have lost a trisomy child, we offer a community of compassionate members that 'get it'. Feel free to join us.
Matthew 5:4 Blessed are those who mourn, for they will be comforted.
I am on a list serv group for trisomy medical issues. You can find it here and join one of the trisomy list serv communities. I mostly just read the posts and glean as much knowledge as I can from seasoned families. Every now and then something special catches my eye and today was one of those days.
I have been very sad the last few weeks at the loss a good friend's trisomy 18 son ( a dedication blog to be posted very soon!). This event happened as about 10 other trisomy children also passed within a few weeks. There are several children in the hospital now, fighting for their lives.
Although the following poem was written specifically for late-term miscarriage, stillbirth, or neonatal death, I am dedicating this to all my friends who have lost children. It is beautiful.
I love you, dear friends...
A Birth Healing Blessing*
Blessed sister, beautiful one
with broken wings.
Your journey is a difficult one
that no mother should have to endure.
Your path is steep, rocky and slippery
and your tender heart is in need of gentle healing.
Breathe deeply and know that you are loved.
You are not alone,
though at times, you will feel like a
desolate island of grief
untouchable
distant.
Close your eyes.
Seek the wisdom of women who have walked this well-worn
path before you, before, and before, and before you yourself were born.
These beautiful ones
with eyes like yours
have shared your pain, and
weathered the storms of loss.
You are not alone (breathe in)
You will go on (breathe out)
Your wings will mend (breathe in)
You are loved (breathe out)
~ Mary Burgess
Author, *Mending Invisible Wings*, a healing journal for
mothers following the loss of their baby through late-term miscarriage,
While Rebekah was in the hospital for a month in June, we got to participate in a special being filmed about our local Greenville Children's Hospital. The WYFF 4 one hour special is called 'Where Miracles Happen'. It is now posted on the news station's website in seven parts, Rebekah is in Part 6. Be sure to check out her starring role: Where Miracles Happen: Part VI - Video - WYFF Greenville! We will be selling foot print autographs for anyone interested! ;-)
Here are some other pictures from that day as each of the dogs visited Rebekah. She was so funny because she wouldn't pet any of them with her hands, but she was most definitely petting them with her feet! As each dog visited, she got more bold with her foot moves. I love my sweet little girl...
Rebekah is thinking about reaching out with her left hand.
She is very defensive of her hands and doesn't like to use them a lot.
She decided to switch to other body parts because she didn't want to stretch out those arms. Here she is deliberately useing her knee to pet a dog.
Because Rebekah was obviously trying to use her feet over her hands to interact with the dogs, I removed her shoes and socks so she could get direct contact. Now she is really getting into it and extending her foot out the whole way!
Here's Boomer from the video link. Rebekah was rubbing him with her foot.
This dog was so funny. He came in and licked her face.
She thought it was so funny she decided to stick her foot in the dog's mouth for a lick.
I was selected this summer to participate in a federally-funded program called 'Partners in Policy Making' which is a leadership training program that helps family members learn the history of disibility law and how to become an effective advocate. Here in South Carolina, it is run through a group called Pro Parents, and they select about 15-20 people a year to participate. I get to travel to our state capital for two day training sessions that will occur over five months, learn about the law-making process at local, state and federal levels, meet speakers who are experts in topics essential to advocacy, and hopefully learn how to effectively advocate so I can better help Rebekah and others like her! Anyone can petition to participate in the program, and if it is not available in your state as a hands-on learning process, there are free online tutorials at the Partners in Policy Making website that cover the technical information learned during the training.
I FINALLY got around to creating and ordering my own personal advocacy cards in August! It has only taken me a year of talking about it to finally get it done. The hard part was coming up with exactly what I want the cards to convey in such a small space. Because my passion is for advocating for children with trisomy 18, 13 and similar conditions, I chose several organizations that support the trisomy journey - especially those in the journey with living children. I obviously couldn't include every organization, but I can say that these organizations make a difference in the lives of families that choose life for their trisomy kids. Of the amount of funds that goes into these organizations, almost all of it goes right back out to supporting families - you can see the fruits of their labor. The list of people they have helped is long, and their leadership is full of integrity. I have been personally helped by all of them -
Trisomy Advocacy Group helps give a voice to those who have none, and helps connect new parents to parents willing to support and help them face doctors and hospitals not trisomy frirendly.
Noah's Never Ending Rainbow helps families with living children and bereaved parents who need a little financial help. They helped fund 14 families attending the SOFT conference this past summer - we were one of them.
Support Organization for Trisomy (SOFT - trisomy.org) provides a way for trisomy families to connect - no matter where they are in the journey. They put out quarterly publications with lots of useful medical information, and have medical advisors on board that are 'experts' on trisomy kids. There is an annual conference that is incredible - for both those with living children, and those who have lost children. It truly is a wonderful support organization.
Hope for Trisomy offers comforting Gemma's Bears and Payton's bears to trisomy families, funds research projects, and helps advocate on behalf of these children.
There is another organization that I wish I would've added - Prenatal Partners for Life. They have helped countless friends of mine, and the founder recently lost her full trisomy 18 son. They support families with adverse prenatal diagnosis that choose to carry to term.
This is the front of the card...
...and this is the back side.
There are many other organizations that support the trisomy community, I listed them in this blog entry months ago. But the ones that made it to my cards are the ones that have supported me most in my journey.
I would really love to be able to go to medical conferences, universities, and any place else where I can show off Rebekah and her trisomy friends and explain that life-limiting does not mean incompatible with life, nor does it mean there is no quality of life. These children are special and have many things to teach us. Rebekah and I are looking forward to our advocacy opportunities and how we can make a difference for trisomy 18 awareness. I start my Partners in Policy Making classes in October - and I can't wait!
I had a really bad day today. Today I clearly saw (for the umpteenth time) the gap between a surgeon's scientific view of life and the compassion I want and crave in Rebekah's doctors.
I have been fighting with the neurosurgeon and the orthodics company about doing another 'cranial remolding orthosis' (molding helmet) for Rebekah's progressively flattening head ('severe brachycephaly with flattening'). Most places won't make them past a child's 18th month, and apparently neurosurgeons know everything because I was told it would do her no good (even though her growth is delayed and her fontanels are not all closed yet). In fact, I was told that for him to say a helmet would help her head would be as truthful as for his to say he was pregnant. Yet I have found online parents that have had helmets for their trisomy two year olds.
I also asked the doctor to review Rebekah's MRI from last summer. I never saw a neurologist to actually get a complete review of the results - only got the written results and discussed them briefly with several of her doctors. The neurosurgeon went through an explanation of how the MRI works and what we were looking at. Basically, Rebekah's whole brain is underdeveloped and has abnormalities. For those who like the medical terminology - she has white matter leucomalacia, delayed myelination patterns, and a thin corpus collosum. She has a lot of extra fluid filling in the gaps where there should be more 'substance' and white matter. The white matter is what is needed to create the neuropathways and help the brain to function normally. You loose white matter over time and this decreases brain function. There are kids born with only a brain stem and no brain who actually can live - they will eat, sleep, cry and maintain the basic of infant instincts/actions all without having a 'brain' or being able to develop. (Wasn't sure why he brought this up...but that is coming soon!)
So what does this mean for Rebekah? (Per the neurosurgeon...) Increased risk of seizure activity getting progressively worse, global developmental delays that we will be able to make some progress on but, because her brain is 'atrophied', we will get to a point where she will 'regress' and no longer develop. There is 'nothing' I can do to help develop neuropathways or encourage development. Or so says the doctor! (So why have studies showed that the first three years of life are critical for encouraging neuropathway development and early intervention is a national program?!)
I have to keep telling myself that she is the same as she was yesterday and this 'diagnosis' doesn't mean anything. God made the brain so complex and amazing that there is no one on this earth that truly understands everything about it. She has survived two extremely life threatening situations all by the grace of God. He can surely continue to develop her despite what this doctor thinks.
Well, the situation kind of went downhill from there (believe it or not) and I started to understand why he was telling me about the 'brain-stem-only' babies. Although he didn't state this is plain words, I quickly realized that he basically views Rebekah as someone that is nothing more than a basic blob of instincts. In fact, I was told that we need to "plan" the "future care" of Rebekah to make sure that we are not doing "to her" instead of doing "for her". (In other words, interventions and procedures at some point are going 'too far'.) Even if we have people that said they would take her should something happen to us, they really won't want to once they find out everything that this would require and how 'hard' it is to care for a child like Rebekah. We need to draw a line and decide now how far we would go in her care or we will look back one day and ask ourselves, 'how in the world did we get here? We regret our decisions!'
REALLY?!?! How would you feel if your child's doctor told you this?
Then I get home and I actually read the 'Summary of Today's Visit' print out that I received from the office. The next to the last sentence reads, "She is nonpurposefully verbalizing, no meaningful interaction."
I am stunned, and mad, and sad. She spent the appointment crying - not because she was nonpurposefully verbalizing!! She is getting FOUR 2 year molars in simultaneously and every morning she is not dealing with this well. I wouldn't be either! She was communicating LOUD and CLEAR to me. And as for meaningful interaction, all you need to do is look at how her eyes brighten when her brother walks into the room, or how she gets a big grin when her nurse comes to take care of her. I have plenty of phtographic proof of her ability to communicate. Just because she cannot write a medical journal article, or even use spoken words, she communicates frustration, tiredness, happiness, fear, and, most importantly, LOVE. This is NOT a brain dead child - this is a gift for us to understand and learn how to love like Jesus loves, how to have compassion like Jesus had compassion...
What happened to the compassion in the medical community that all we have become is a diagnosis or a medical chart? I fear for my daughter's future in the hands of physicians with this view... Needless to say, we will not be returning to the neurosurgeon's office.
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