A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Showing posts with label letter. Show all posts
Showing posts with label letter. Show all posts

Friday, September 9, 2016

School Letter to student/parents

For the last 3 years I've been making pamphlets to send to school with Nick. Usually it has been to his teachers and last year I made one for the students as well. To help answer some questions and normalize the equipment Nick uses.

When I was looking over Nick's pamphlet for this year I realized that it has a bunch of information that is helpful for the teachers, but not really stuff his classmates need to know. So instead we wrote a letter, with some pictures.


Hi classmate,
My name is Nickolas, you can also call me “Nick” and I am in your class with Ms L.
I am 6 years old and in Grade 2. I love playing Avengers and Star Wars and may recruit you into a game! My favorite characters are Captain America and Darth Vader. I love playing at recess and my favorite subject is gym. I may be quiet at first, but once we get to know each other I like playing different games. I like wrestling and playing sledge hockey this summer!

I was also born with spina bifida and hydrocephalus. But that hasn’t stopped me!
When I was born I had a hole in my back. This is called spina bifida. My spine was open and the nerves in my back were damaged. These nerves can’t tell my body how to move and what I feel.

I had surgery to close the hole when I was 1 day old. Even though my back is fixed (and I have a large scar) the nerves to my legs and feet are still damaged. I can’t feel the back of my legs or the bottom of my feet very well and have weak muscles in my legs.
I also have hydrocephalus which means I have extra water (fluid) in my brain. I have a tube, called a shunt, which takes the water from my brain and puts it in my belly. You can’t see this tube, but I have a cool scar and a bump in my hair, but you can hardly see it. I also have a latex allergy, which means that I can’t be around any latex balloons or I can get sick.
You may have noticed that I use extra equipment to help me move around the school. I wear braces on my legs to support my ankles. They have Avengers on them! I also use blue Crutches, I need extra space so that I can put the crutches on the ground. I can walk and even run with my crutches. Please don’t try to squeeze around me, because I may lose my balance and fall.

I also use a red Walker that I pull behind me. Please don’t push or pull at the walker because I might fall. I can run and play at recess and gym class with my walker. I also use an orange Wheelchair that I use on class trips and on my bus. I can push myself, but if you want to help push me, please ask me first.
I have an older sister named Katheryn who is in Grade 3 at XX. I also have 2 big black dogs named Rory and Chuva. They are very friendly. My parents are named Amanda and Kyle and my mom writes a blog about spina bifida and our family.

I am excited to meet new classmates and spend the year with you!
From Nickolas and Family



Nick has the same teacher as last year, but only 2 students are the same as last year. He is in another split class, this time being the older grade.
I think it will be a good year for him!

Saturday, February 20, 2016

Our MRI exprience letter

So I am a letter writer.
After our experience with the MRI, it kept gnawing at me and so I thought I would write a letter. Not to get anyone in any trouble, but just to raise awareness of our experience to potentially make some changes for next time.
Writing it made me feel better. I'm not sure if I'll actually send it or not.


To whom it may concern,
I wanted to write to you in regards to my sons experience with a recent MRI.
My son was born with spina bifida and hydrocephalus and we have had a lot of positive experiences with Sick Kids. He has had a number of sedated MRIs over the last 6 years, but I felt that this year he was ready to try his spine and brain MRI without any anesthetic.

When we got the phone call with the information for the MRI I explained that this was our first attempt at an awake MRI and if there were any resources. I was told that there wasn’t really any way to prepare, but I could look up youtube videos. It surprised me that there wasn’t anything specific to Sick Kids, as we found the Sick Kids surgery video very helpful.
To prepare my son we watched a couple of different youtube videos, but he really wanted to know what it was going to be like at his hospital. The night before his MRI we found the MRE Tour at SickKids on youtube, which talked about the MRI and it helped to settle some of his fears.

We arrived early and settled in for an expected long wait, as we were booked towards the end of the day. I was surprised, and had forgotten, that your 2 bathrooms in the MRI department are not easily accessible (by button) for wheelchair access. So my son needed help getting in and out of the bathroom.

But the purpose of this letter is to explain our experience with the MRI and how I learned a couple of hard lessons to properly advocate for my son. When we got to the MRI room and we were getting my son settled he was very nervous, but had his brave face on. They gave him the movie eye glasses, but the ear muffs wouldn’t fit in the head cage. So they gave him foam ear plugs instead. Then they told me I could sit in the rocking chair, about 10 ft away from the machine and gave me earmuffs. I had thought I had to sit so far away because of something to do with the test.

I took the direction of the MRI tech, as I haven’t been in an MRI with my son before (but I had one when I was pregnant). I sat and read an old magazine for about 45 minutes. Towards the end I could hear a noise, which I thought was the machine. Eventually they stopped the MRI and pulled him out when they were having difficulty with a picture. That is when I realized that the noise I had been hearing was my son sobbing.
After we calmed him, and removed some of the blankets around him, he was willing to try again. This time I was told I could stand with him and touch him and try to keep him calm. Unfortunately after about 15 minutes he wasn’t able to keep still for the final series of pictures. They offered us another machine where the earmuffs would fit in the head cage, and we went back to the waiting room.

When we got to the next machine, the foam ear plugs and ear muffs with the movie playing in them were given to him, with the eye goggles. I was again asked and able to stand with him and be with him through the next 15 minutes as they got the last set of pictures they needed without difficulty. No tears.
When it was all done he said that the last test didn’t make his head hurt, and he enjoyed and was distracted by the movie.

I wanted the opportunity to share our experience. As a parent in a new environment I took the direction of the MRI techs to determine what I should and should not do, and what to expect. It was incredibly heartbreaking to know that I had been so close to my son who needed me and I didn’t even know. As they felt that foam ear plugs were enough sound blockage for a 6 year old with shunted hydrocephalus, I didn’t question it as I should have. If the MRI tech directed me to a chair in the room instead of allowing me to touch and reassure my child, I didn’t question it, as I should have. I took the direction of the healthcare professionals who do this every day.
I really feel that Sick Kids is an incredible hospital, but this particular experience did not meet our expectations.

Thank you for allowing me the opportunity to share our experience.
Amanda Ridding, and my son Nickolas



*Update* I was contacted by Family Relations at Sick Kids who thanked me for the feedback and recognized that it was a difficult experience for us. The message discussed the importance of family centred care at Sick Kids and that the feedback will be forwarded to the MRI manager.

Saturday, April 20, 2013

Informing the Informer

As I am now a working Monday-to-Friday mother, my blog-writing clusters around the weekend, and if I have a couple of things I want to write about, then I'll stagger the posting through the week.

Well today is Saturday and I don't really have anything to write.
And then I was looking through some of the blogs I follow and found this article.

http://bloom-parentingkidswithdisabilities.blogspot.ca/2013/04/is-selective-abortion-for-disability.html

It brought back some of the questions that came up from the medical conference that I went to in the fall. I thought that I had blogged about my feelings, but I must not have. It was painful and very hard for me to sit through that day. And I do not recommend to any parent to go to a medical conference about something their child has.

The months that have passed since the conference have dulled the feelings and emotions I felt, so I guess now would be the time to write about it.

This is a conference that was directed at physicians, obstetricians specifically, and geneticists, but as a nurse I could go as well. One of the topics to be presented was neurotube defects and current research and news. They were going to talk about the MOMS study and I wanted to hear what they had to say.
I thought I would learn something.

I didn't. Or at least I didn't learn anything about spina bifida that I didn't already know. But I learned something about myself, and about how neurotube defects are seen by the medical, specifically the obstetrical population.

I heard all the medical information, all of the pictures about what forms in the baby and what doesn't, as well as when ect. A couple of doctors that I knew talked. And one of the speakers (the one talking specifically about the surgery in Toronto, was unable to make it).
Dr Church, our developmental pediatrician from Holland Bloorview was one of the speakers. She actually made me cry. She talked about the medical issues that kids have to deal with, but she had a positive spin to it (of course she would - she actually sees these kids). What brought the tears was a comment about how our kids sparkle.
They had another mother come and speak to the theatre full of doctors ect and talk about her experience with her child who was born with a serious medical condition (not spina bifida) and she was very positive and made the point that even though there is a lot of medical information and concerns, it doesn't make a child any less special.

There was a conversation during the conference about informed consent. With an argument back and forth about giving the diagnosis and making sure that parents are being given informed information. Some doctors people saying that giving just negative was enough, that is was true information, others said that it has to be combined with the positives and then there was the argument of how could you know either way. There is no such thing as a fully informed decision, and doctors are fooling themselves if they think they could provide such information.

And the doctor that actually gave me Nick's diagnosis was there. My heart was pounding and my blood pressure was rising and I knew that I had to stand up and say something.

So I did. I stood up and talked about how I received the spina bifida diagnosis when I was 20 weeks  pregnant. And we were told "this is what you child has, you have 2 weeks to decide if you want to terminate." That we were encouraged to terminate, that they said he would have all kinds of difficulties, and how Nickolas does have everything that Dr Church said comes with spina bifida. But he is happy and 3 years old and not anything like what you (as in the doctors) think he is.
My voice was breaking and I was crying a bit.

And I felt like a total idiot.
But Satisfied that I had made my point.
I told everyone at work about how stupid I felt almost breaking down in a room full of people. I think It was worse in my head than it actually was. And I will never see any of those people again.
And I got to feel good about what I did, and hopefully someone will rethink their approach.
Of course I vowed never to go to another medical conference like that, unless it was directed specifically to parents.

So back to the article that got me thinking about that day.
http://bloom-parentingkidswithdisabilities.blogspot.ca/2013/04/is-selective-abortion-for-disability.html (In case you didn't read it the first time)

The article has a number of points in it, including the perception of parents who chose on a selective abortion becaue of a prenatal dianogsis. But I am not raising an abortion issue. I am raising an information issue.

Doctors actually believe that they are giving parents all of the information to make an informed decision when they tell them about all of the medical problems their child may face. They truly believe that combining this with information from families who have faced the same problems would be biased (and their are not-biased, even though many obstetricians have never seen a child with said diagnosis). Not all doctors of course, but a surprising number of them.

The article by Andrew Solomon, published this month in the New Yorker; Medical progress, social progress, and legal regression talks about abortion, both the blog and the article brought up a lot of different points, what really hit home was about how doctors are actually giving the diagnosis and thinking that women are making a choice. A quote from the article
I do see a problem, however, in the speed with which women who have no prior exposure to the conditions in question are expected to make these decisions. Women often terminate a pregnancy without knowing what life would be like with and for an anomalous child. It is worth publicizing the satisfaction that the experience may entail, so that the pro-choice movement becomes the pro-informed-choice movement.
I have said all along how happy and thankful I am that I felt confident and comfortable enough in myself and my knowledge to listen to myself, to explore our options and make an informed choice. Along with Kyle of course. How if we had made a quick, scared decision we would regret it, and we would be missing such an integral  and positive part of our lives.


I'm glad that other people are recognizing that there is a need for informed choice, or at least for doctors to recognize that they are not providers of all of the information parents need. That it is not just us parents that are saying it.

Another aspect of what both articles talked about was the perception of physicians about parents choice. I am not going to address this, and I find it very depressing that someone would think that we as a family are less deserving of support because we chose to have our child. That is too much to handle at the moment. I would hope that at least the 10 obstetricians that I see every day and know me and Nickolas are able to provide a more informed picture to parents receiving a diagnosis.

I recognize every day that my life is better because we have Nickolas. We appreciate things, I have a new perspective I might not otherwise have had. And  I have no problem talking to a room of 90+ people, that fear of public speaking went out the window about 3 years ago!

I feel that a follow up letter may be in order.

http://riddingfamily.blogspot.ca/2010/07/letter-wake-up-medical-professionals.html

Saturday, May 12, 2012

The Letter

After I wrote last week about the end of our spina bifida group and posted it on my facebook (what I do for some of my better posts). I was contacted by someone from media relations at Grandview Children's Centre. She offered support, if possible, but also presented me with an oppurtunity to have a voice.
I have not been the kindest with my feelings about the care we have received from Grandview. Especially when I was furious when we lost our physiotherapy at the beginning of 2011.
But talking back and forth I have agreed to do a 20 minute presentation to the Board of Trustees at a Grandview  meeting in September. To talk about our experiences, triumphs and difficulties. It is called Voice of a Parent.
I can't wait!

But I started of my blog to post my letter.
This letter is what I am sending to the manager of the spina bifida and spinal cord injury department, as well as a couple of other people at Bloorview. (What is it with all of these -view names?!). I am also planning to email it to our team at our spina bifida group.
I hope the letter is compelling.


š

May 12, 2012
To whom it may concern,

I am writing to tell you about a wonderful program at the Holland Bloorview Children’s Rehabilitation Spina Bifida program. To relate to you our experience with the Spina Bifida Parent-Child group that runs the first Thursday of every month. I want to tell you how this unique and valuable program has changed our lives (which we were notified of last week). I want to implore you to reconsider the permanent cancellation of this program. I would like to work together to problem solve ways to keep this program running to benefit my own family, but also other families following us, who are affected by spina bifida.
My son, Nickolas was born November 2009 with spina bifida and hydrocephalus. We first started attending Holland Bloorview when Nickolas was 3 months old. For more than 2 years we have been making the trek to Holland Bloorview every month for spina bifida group (taking the summer off). We only missed one group when Nickolas was hospitalized.

Spina bifida group is a group for children who have spina bifida and their caregivers to attend a 2 hour session each month. The session begins with a 1 hour opportunity for team members to assess and discuss current progress, the second hour allows caregivers/parents to have an education session with one of our team members, and also have the opportunity to talk as adults amongst ourselves. It is amazing how much 2 hours a month has had on our journey with spina bifida.

My first concern when we were told about the cancellation of our spina bifida group is the loss of social support that I get from meeting with other parents who have been there, and are still here. It is the parents who know the terminology, they have received the same words, been offered the same choices, have waited the same wait, and hope the same hope. There is nothing to compare sitting down every month with families who just understand. I belong to a number of online communities and forums but it doesn’t compare to actually sitting in the same room with someone.

 Last week when we were told by management that our group was going to be cancelled we discussed ways to continue this aspect of group through a support group. Parent mentorship was mentioned, but it is the group aspect not one on one that was important to me. As a parent I find that a support group is such an important part of keeping myself connected. But as a parent of a child who has special needs it is hard for me to do things solely for myself. I don’t know if I can make the same commitment to go to a support group that I can to go to spina bifida group. Because spina bifida group is much more than just parent support.


Nickolas would not be where he is today without our spina bifida group.

This is the place where we have monthly face-to-face contact with our professional team. It is in a safe, leisurely environment that Nickolas trusts. It allows myself, as a parent, to ask questions and voice concerns in an atmosphere that does not have a time limit.
It is an environment that provides an opportunity for rapport and a relationship. This is truly where my parent-professional relationship flourishes and where Nickolas’ client-professional relationship has started. This is a relationship that has slowly developed over time as Nickolas has started to trust his team. This is something just isn’t possible in an appointment time in a clinic room every 6-9 months. I am terrified to lose this relationship and the trust that Nickolas has built with his spina bifida team.

This group provides the opportunity for Nickolas to be seen and where I could go with questions on concerns between treatment. The team is who I went to while we were on a one year PT/OT waiting list at our local centre, Grandview Children’s Centre; and again when we were on a 6 month wait list last year. They are the ones who addressed my worries that Nickolas was losing valuable therapy time and opportunity.
I did not realize that Nickolas had outgrown his first pair of AFO’s until Kim, our physiotherapist, at spina bifida group noticed. I have been worried about different bruises and red marks on Nick’s feet and have been able to get Julia, our nurse, to look at it after we have seen orthotics.

The idea that Nickolas could benefit from a wheelchair was first brought up in spina bifida group. Both Kim and Beth, our occupational therapist, noticed how Nickolas was outgrowing his stroller. And I was prepared for my child to be in a wheelchair after an education session earlier in the year. The idea had never even crossed my mind. And the wheelchair has given Nickolas his independence in a way I never would have imagined. We would not have this without our spina bifida group . There just isn’t the time allowance, relationship or subsequent realization, in a clinic that is 6-12 months apart.

Spina bifida group has also been an outlet for Nickolas (and me) to try different assistance devices that I didn’t realize was needed. From the corner chair to castor cart and different walker options – posterior, anterior, cart etc.
Nickolas was struggling with his speech last year, and I knew that the spina bifida group was a place to strategize with Sukaina, our speech-language therapist. I was encouraged and hopeful that we would eventually get there. And when Nickolas started talking – we could celebrate together.

When Nickolas was starting solids I had the opportunity to discuss this with Julia, our nurse. When constipation subsequently started I felt comfortable to email Julia, right before a long weekend, with my concerns. This relationship started in our spina bifida group. When a similar situation occurred this past winter we had face to face, personal contact to problem solve together. This spring we are working on bowel management and Julia’s input and problem solving has been invaluable. When issues come up, I know that I’ll have the opportunity to ask questions and deal with concerns, in person, at least once a month
 I strongly believe that Nickolas is where he is, and doing so well because of the time, relationship and assessment that we have gained with our spina bifida group.

The education component is helpful, but it becomes repetitive after a while. But as a new mom it provided a lot of helpful knowledge. It has given us an opportunity to be presented with knowledge and information in a group setting that is specific for the needs of my own child. It has also provided a chance for my spouse to come and learn and ask questions. This is not possible during clinic. Online or paper education modules are already available if you know where to look. But it does not compare to personal education about someone who knows your child and can teach what you want to know.
I think that losing this educational aspect of group would be disadvantageous to families who are following us in our spina bifida journey. The knowledge I’ve gained has helped me to feel more confident with different aspects of spina bifida. It has also given me an understanding of what questions or concerns to address during our clinic visits.

I implore you to reconsider the cancellation of this spina bifida group. I believe that it is necessary for the continuing care and future abilities of my son. It has provided us with a family-centered partnership. I am terrified about the detrimental effect on our lives and abilities with spina bifida after the permanent disbandment of this spina bifida group.
I was looking forward to continuing group for one more year before the beginning the next step of our child as Nickolas enters the school system. I was anxious for the knowledge, experience and support that this monthly group provides when it is time to make this transition.

I have a regular blog in which I discuss our journey with spina bifida. I have discussed the impact that spina bifida group has in our lives on my blog, as well as writing about my initial worries and fears and experiences after learning that the spina bifida group is being dissolved. I encourage you to visit my blog to read about our experiences and link into specific experiences in which spina bifida group has positively impacted our lives. http://www.riddingfamily.blogspot.ca/2012/05/end.html
I ask for time and opportunity to problem solve to maintain this service which is so essential for our care. If parental input is needed before such a drastic change in our care I’d like to offer to work together to come up with a positive plan that will not have such an impact on my child.

I have some ideas that I would be willing to discuss further including meeting every other month, decreasing times between clinics (i.e. every 3 months instead of every 6-12 months) this would allow the support component and the relationship to continue to flourish. Fundraising for a financial need, contacting the SBHAO to assist in problem solving, setting up a supplementary support group through the mentorship program. I know there are other ideas out there and would propose a focus group with other parents and management to attempt to explore other opportunities.
Thank you for your consideration,

Amanda Ridding
Mother to Nickolas Ridding

Wednesday, July 28, 2010

The Letter - Wake up medical professionals!!!!

This is a letter that I started writing when I wrote my one year post. It got me thinking that complaining about it is not enough. I felt that I had to do something! When I feel the need to do something, to make a change when I felt that 'service' has been lacking, or I have been treated unfairly, I write a letter. And here it is!
I am not sure who I am going to send it to. I am thinking the Canadian Medical Assocation, Society of Gynecologists and Obstetricians, and Canadian Association of Midwives.
I am also encouraging all those other mothers who are as pissed off as I am - write. Write that letter that has been in the back of your brain for the last year, or two or more. Write to people who misrepresented spina bifida to you, and brought you to that dark place before you saw the light - what spina bifida actually looks like.
I am a strong beleiver in the saying 'the pen is mighter than the sword'. Yes cheesy I know.

Here goes:

To whom it may concern,


I am writing in the hopes of improving the experiences of someone who has been given a prenatal diagnosis of spina bifida and hydrocephalus. I have been thinking of writing this letter since the birth of my son, but kept putting it off, thinking it would not change anything. But the more I hear stories of other parents and their experiences; I decided I had to write.


My son was born with spina bifida and hydrocephalus on November 13, 2009. We got his diagnosis one year ago. This is a recollection of our experience.


July 16, 2009. This was the day I went for a second level ultrasound, 21 weeks pregnant and knowing that my baby was a boy and 2 weeks ago they couldn’t see his cerebellum. My IPS had come back negative so I tried not to worry. My regular obstetrician, Dr A, who was a co-worker, encouraged me not to worry. I spent 2 hours having an ultrasound by different techs and different doctors, all who did not tell me what they saw. Finally they told me I could go wait and talk to the doctor, and they gave me some pictures.


The doctor, Dr B, called me in, this was someone that I had never met before but was seeing me as a favour to Dr A. The conversation went “the ultrasound shows that the baby has spina bifida. You are 21 weeks along; if you want to terminate you have until 24 weeks. We will support whatever decision you want to do and if you want to terminate we can take care of that here instead of your own hospital if you want.” The doctor and I discussed what spina bifida was, a neural tube defect, which it was in the lower lumbar, upper sacral area of his back, which the ultrasound had showed. I was told that spina bifida meant being in a wheelchair, wearing diapers for life, being dependent on us, and intellectual problems. Then he said “OK I’ll leave you alone now and give you some time. There is a phone you can call someone and I’ll be back.”


This is what your baby has, you can terminate, this is the horrible things that your baby will be facing, and I’ll be back. I am an obstetrical nurse, but I didn’t have any firsthand experience with this, other than what he was telling me, and what I had learned in school – which was not much.


This is the last time I saw Dr B, who is part of a high risk pregnancy unit. Over the next two weeks we collected a lot of information about what spina bifida meant, and what to expect. My husband and I received valuable, research based information the next day when we saw the genetics doctor, Dr Chitayat, who provided us with up to date information and the support we needed. We were able to discuss neural tube defect, anticipated physical function, hydrocephalus and more. We researched online as well as contacted the Spina Bifida and Hydrocephalus Association of Ontario.


We were further referred to Dr. Rutka at Sick Kids, and Dr Biggar at Bloorview Kids Rehab who were able to show us what spina bifida was and what kids look and act like. Discussing spina bifida with doctors who knew what they were talking about, had worked with, treated and watched these children grow. They gave us a true picture of what life would be like if we continued with the pregnancy; which is what we decided to do.


After we had made our decision not to terminate, about 2 weeks later (at 23 weeks) Dr A pulled me aside at work, he wanted to talk to me. He said that Dr B had called to ask him to talk to me, he wanted to make sure that I was aware of what we were facing with a child with spina bifida. He said spina bifida meant paraplegia, total dependence, mental deficits, the child would be in diapers for life and we needed to think about how this would impact our lives and our older daughters life. He wanted me to reconsider our decision (not to terminate). I was very clear that I had researched spina bifida and did not believe this to be the case and would not reconsider.


For the rest of my pregnancy I had shared care between Dr A and the high risk clinic in Toronto, but not with Dr B.


This experience is by no means unique. In fact it seems to be common place. From discussing my experiences with other women and families in Canada and the United States there was a lot of commonalities in how we were told about spina bifida from family doctors, obstetricians, mid wives and perinatologists. My experience was almost word for word the same as women reported in online spina bifida forums, from families around the world, as well as a support group at Bloorview.


To me, this is scary, as I see that it reflects the outdated knowledge of the general medical profession about spina bifida, who are trying to inform others. I think this showcases the need for further education around the current experiences and expectations of spina bifida.


Our life with spina bifida has given us a happy and healthy son. He had surgery to repair the lesion when he was 24 hours old, and surgery to insert a vp shunt when he was 3 weeks old. He goes to physical therapy and gets catheterized regularly. We have additional doctor appointments and some extra worries, but anticipate a good and successful quality of life. We are confident that he will be able to walk, achieve social continence, attend school and become independent. This is not the picture that was painted for us, and is currently being painted by doctors who are telling families what a diagnosis of spina bifida is. They discuss archaic beliefs and outcomes about spina bifida and say it is fact. And parents believe what they are being told.


I am thankful I did not listen to what Dr B told us, and encouraged us to do. I am thankful I had the fortitude to seek further information and to educate myself and my family about spina bifida. I am saddened to think not every woman who is told such a scary diagnosis would seek further information, beyond what the obstetrician/family doctor/midwife told them, and the consequences of this. I believe that every woman has a choice, but an informed choice. Informed with current research and with reasonable expectations of what life with spina bifida and hydrocephalus entails.


Being on this side of a prenatal diagnosis I think it is bordering on incompetence to give out such negative and one-sided information about spina bifida. Doctors who do not understand about what life with spina bifida entails should not see themselves as being a reliable source of medical information to parents. I believe this is common through giving a diagnosis that is not fully understood by medical professionals who only deal with the healthy norm of the population.


I think there is an opportunity for valuable education for medical professionals to have updated knowledge about spina bifida. I propose you take this opportunity to think about how you can improve these experiences through current and accurate education.
Thank you for your time,


Amanda Ridding