I essentially became a patient. I mean I had always gone to my pediatrician, gotten my immunizations. Even though I was a healthy grad student, I went out of my way to get Chicken Pox vaccine when it came out because I had never had it when I was a child.
But 11 years ago, I realized what it was like to fight for my life and my childrens’ lives. I was pregnant with twins and had already been hospitalized at 16 weeks for dehydration and fatigue. So when it happened again in December, I just imagined that I would get a couple of day hospital stay with IV fluids.
That wasn’t anything but the case. We described my symptoms to the doctors in the ER, they quickly sent us to Ultrasound, but the tech was already at home. They called one in from home to do an emergency Ultrasound, giving us plenty of time to wait. Thankfully (in this case), my husband is a quiet guy and kept a lot of his imagined possibilities to himself. Since I had a regular prenatal check-in days before, I just assumed we’d get the ultrasound and then we’d get a hospital room.
Tech came in. Did ultrasound, much like the ultrasounds we’d been having all along for my high risk pregnancy. Left room. Gone a long time. Then the doctor returned, talked to my husband. Told him we were going to be transferred to Boston. I chatted all the way to Boston with the EMTs in the ambulance. They probably wondered what I had (medication wise) – but I believe my brain tries to help my body be calm by being as far away from reality — and to distract as much as possible.
Matt (my husband) had stopped by the house, realizing that we were in for a long night at Boston – and also picked up a dear friend. I didn’t quite understand the why of this – but it was truly a miracle to have this particular friend there. She was a non-smoker who had lung cancer and had developed keen skills in navigating hospital life. I learned later that what Matt was imagining as possibility was that I would die.
I was whisked directly into the ultrasound room in Boston and the ultrasound was performed by this nice gentle spoken doctor. It was at that time he finally called it what it was – “demise of Baby B”. Until then, our local hospital had only ever said “We can’t find baby B heartbeat.” This is where my husband had also linked those two statements, but I did not put it together until Boston. (Keep in mind that I had years of schooling, but I am well aware that in moments of stress – the brain just can’t hear and make sense of language that you’ve known all of your life).
After confirming Baby B demise, we were taken to labor and delivery. I was at 29 weeks, the babies had always measured small – they estimated they were each about 1lb at that time. It seemed a little odd but finally the doctors explained that they were afraid what my body would do, given the death of Kaitlin. In many cases, it goes into labor immediately. They pushed steroids that would help the lungs of Baby A develop in case of premature delivery. And we waited. Keep in mind, this was before smart phones…. (the agony). We had cell phones, but they weren’t the distraction that they are now. We all talked and waited. We heard other moms come in and deliver babies.
The next day, I was checked and they moved us into the “Miscue” (it was an acronym – but pronounced Miscue). Basically it was private hospital rooms for moms who were pregnant but had something wrong. Now you understand why I remember the part of the hospital – I mean, really – and they still call it that. For a mom who was pregnant with twins and only had a surviving twin, “Miscue” just sounds like the hospital was laughing at me. But yet, I was tough, strong and aware that it would take all of the fiber of my being to make sure that if Alexis (Baby A) was going to fight – that I was going to fight. I was sad, but losing Baby B made me even sadder for the moms who were in Miscue and had lost their only baby. And sad for the moms who had experienced that or what I was experiencing.
After several days of “demise of baby B” and hospital life, doctors made a plan that I would be discharged. I would be on strict bedrest at home and have appointments every 3 days in Boston. Thanks to wonderful friends, I survived the 8 weeks of bedrest with the sole purpose to keep Alexis alive. If she was going to fight, then I was going to fight. We were going to get through this.
I tell people (some who ask and some who don’t ask) – that this period of my life is known as the ‘wodgy’ period. The time in no one’s life when you are carrying an alive baby Alexis and a dead baby Kaitlin. I carried on like this for 8 weeks – distracting myself with the full series of “Sex in the City” (never watched it before) and reading books. I probably talked on the phone a lot, and of course, every 3 days into Boston for check-ups.
I do often wonder what Kaitlin would be like – would she be another Alexis – full of joy, happiness and spirit (but super-tough medical nut)? or would she be a Jessica – full of energy, curiosity and compassion (and only 1/2 tough medical nut)? Or would she be a Kaitlin – the child I carried but never met. The child I love but never held alive.
11 years out, it’s still hard to see twins – talk to other moms about their twins – talk to moms who aren’t at least 29 weeks along – talk about the day that Kaitlin died.
I know now that that moment in my life – taught me that I can handle the toughest of situations given to parents. I know it made me stronger. December 15 will never get easier. But the experience makes me grateful for the joy and compassion from Alexis and Jessica.
I wasn’t asking for my own, I was asking for my daughter’s medical record. You see, she had ‘graduated’ from the NICU but had spent time in 2 hospitals within 1 network – and we were already at our 3rd hospital.
Fortunately, I knew to ask. Unfortunately, it wasn’t easy. Thankfully 9 years have passed and I don’t remember all of the details – other than I know I had to show up in person at both hospitals. I think I had to pay at one, but I don’t think it was that painful (to the pocketbook). I scanned the pages and created a FYOL document – FYOL = First Year of Life. It’s 4MB and 122 pages.
The reason I’m fortunate is because having the data myself saved my daughter (we can argue if I saved her quality of life or just her life). But most doctors would agree recurrent high blood potassium isn’t an ideal situation. The Story:
“So when Alexis was celebrating her 100th day in the hospital and her 1 year birthday at the same time, we were assigned a kidney specialist – but ultrasound didn’t show anything but yet we could leave the hospital for 3 weeks because Alexis had elevated potassium levels. And I thought, hey wait – I have notes from her NICU and ‘step down’ days that show her bloodwork having high potassium too. I had all of Alexis’ paperwork by then, plotted the data and spelled out in an email to the doctors on her team. Sadly they dismissed me. But I referred to Dr Google and had the answer, so I emailed the head of the kidney department and said “My daughter has pseudohypoaldosteronism type II. Who on your staff can see us and confirm the diagnosis and start treating Alexis?” He emailed back even though he was traveling and validated my observations and recommended a doctor on his team.” [story from my MedX talk in 2013 or the video]
Without being armed with the knowledge of my daughter’s details and being able to share it with her new hospital, we never would have begun easy treatment with extra sodium.
It’s never easy to diagnose pseudohypoaldosteronism type II, and even more impossible without trended data. And when those trends sit as dots in individual hospitals, it will never be a trend. So the diagnosis was done by a Mom – who did have access to all of the data. But not without hard work to connect the dots. But then again, it’s my own daughter’s life on the line.
Go to GetMyHealthData.org!
2015 marks the International Year of Light, recognizing
When they had a call for article topics, I couldn’t resist suggesting LightAide. Supported by UNESCO, the International Year of Light highlights the central role of light in the present and in the future of us all. Especially important for LightAide and the overwhelming response we have heard from teachers — helping to aid students in learning in a new way.
Today, International Year of Light Blog shared the article about LightAide and impact it’s having (Inspired Design Opens Minds): http://light2015blog.org/2015/07/02/lightaide-inspired-design-opens-minds/
One of the comments from a reader truly touches me:
Nancy Connally: “How wonderful! The best creations happen when Love is the underlying motive….”
Repost of Boston Children’s Hospital Thriving Blog Article (now misplaced in the internet) – from 2012
In college I had three majors, and eventually went on to earn a PhD and MBA. But my biggest life lessons came from my MOM degree. When I was pregnant I found out I was having twins. Baby A and Baby B were growing fine until week 29, when suddenly I didn’t feel well and went to the hospital. At that point, the doctors told me that they couldn’t find Baby B’s heartbeat.
I was rushed to Boston for further testing, where it was determined that Baby A was alive, but Baby B had died.
Two months later Baby A, now named Alexis, was born. She weighed just 4 lbs. We were given a few moments to meet her before she was whisked away to the neonatal intensive care unit (NICU) for monitoring. We then had a chance to say goodbye to Baby B, who we named Kaitlyn. The hospital provided us with lovely print of Kaitlyn’s footprints that we still cherish today.
We were given time to process our grief, but soon a doctor visited our room with devastating news. “Alexis is going to die within her first month of life,” she said. “You should call your family and friends to meet her; she doesn’t have long.” Then she left.
It was a surreal experience to say the least, but two and a half months later Alexis was still in the NICU. She had a long list of medical problems, but the list was overshadowed by her will to live. She was too sick to do much, but she clearly recognized my touch and responded to her dad’s calming songs. Over time her condition improved and we eventually graduated to home care.
As Alexis grew I became increasingly amazed by how far she had come. But despite all she had accomplished so many people continued to define her by her “wrongness”. After all, at just 1 year old, she was dealing with:
- Developmental delay
- Plagiocephaly (a flattened appearance in the head or face)
- Choanal atresia (a blockage of the nasal airway)
- Microphthalmia (an eye abnormality where the eyeball is undersized)
- Congenital dacryostenosis (severely blocked tear duct)
- Cleft palate (malformation of the roof of her mouth)
- Risk of Aspiration (swallowing difficulties from cleft palate and blocked nostril)
- Clasped hand deformity/camptodactyly (abnormally curved hand)
- Upper limb hemihyperplasia (unequal growing of the limbs)
- Peripheral pulmonary stenosis (a narrowing of the arteries)
- Bilateral Stenotic ear canals (A narrowing of the ear canal)
- Cervical vertebral body anomalies (fusions in her cervical spine)
- Hydronephrosis (a backup of urine that causes the kidney to swell)
But no mater how daunting this list looks, her father and I see a different list when we look at our daughter:
- Love of life
- Happiness in her world
- Exciting and social
- Belly busting laughter
Life with a chronically ill child is not easy. Right now Alexis’ medical records are taller than she is, and the list is growing. But on the bright side, Alexis is growing too. In fact, that was my biggest problem with Alexis’s medical care for so long. I wish more doctors acknowledged the bright side.
As a parent of a sick child, I’m asking medical professionals to think about how their actions impact those they treat, outside of tests and prescriptions. To do that, here are a few things to things to keep in mind:
- Always acknowledge, appreciate and respect the family.
- Please understand why we are so anxious to know a diagnosis. We appreciate your desire to be thorough and “solve” our child’s problem, but that solution is often just the beginning for us. We’re anxious to know how our lives will change and to find ways to balance that change with parenting techniques that will make our children’s lives better.
- We need to be partners in the care of our kids. You see them for a few hours every year; we keep them alive for the other 8,755 hours.
- We know that part of being a team means getting bad news. However, you have the power to layer those conversations with as much hope and understanding as possible. Please do your best to exercise that power.
I know this list can be followed because I’ve experienced it firsthand. After years of treatment and following Alexis through one challenging diagnosis after another, one of Alexis’s doctors recently watched her walk out of her sixth annual checkup, hand-in-hand with her dad. The pediatrician was so moved by all Alexis has overcome she started to cry. She told me later that the tears started flowing because she was so proud of Alexis, so proud of us as parents and proud of herself and her staff for helping everyone get this far.
That afternoon we all saw Alexis not as a collection of wrongness, but as a bundle of hope. We knew that six years after her birth, “A” didn’t just stand for Alexis, it stood for Awesome.
Video and photos http://schnaderbeck.blogspot.com/2010/05/alexis-rocking-guitar.html
October 2006 (age 8 months)
December 2009 (age 3 yrs)
April 2010 (age 4 yrs)
May 2012 (age 6 yrs)
What if these “A-a-a-a” sounds could turn into a sentence that Alexis could speak?
Did you know we have the technology to do that? To synthesize together a ‘donor voice’ to Alexis’ natural capabilities? TODAY, my friends.
VocaliD was started by TED talker Rupal Patel who fascinates the world with her research, now bringing that research to reality. Her work will change how Alexis interacts, giving her a voice that sounds unique and custom to her ears – not something out of sci-fi / computerized processing of a generic voice. Rupal and her team at VOCALiD will create a voice for Alexis to change her A-a-a-a sounds to the voice of Alexis we’ve never heard before.
You can help:
a) Please share! Contributions through VocaliiD Indiegogo Campaign $$ welcome (deadline June 23)
b) Please share! Need Recipients (people using speech generating devices) to sign up and purchase before June 23 – a tremendously discounted offer – $1000 instead of costs upwards of $20,000!
c) Please share! One day you might need this technology, but today kids like my daughter need it!
Help in anyway you can to share this information, VocaliD needs your help to raise awareness and make this research a reality for so many with speech disorders!
At the end of November, LightAide and Perkins were featured on the CBS Boston Eye on Education segment with Paula Ebben (@). Check out the wonderful video! Thanks Marguerite Bilms and Perkins team for working so hard on testing and distributing the LightAide!
If this little video gets you interested, then guess what? You can win one of your own!!! WonderBaby.org is sponsoring a Holiday Giveaway – and one of the items is a LightAide. So rush over to the website and enter before December 17th!
And for anyone who enters by December 17, you’ll get a 10% discount on the LightAide purchased before January 15. So go go!
It was great to celebrate yesterday, but now we return to our regularly scheduled programming. It’s exciting!
LightAide is improving lives of many who have visual impairments, cognitive challenges, motor-coordination and autism. I won’t rest until LightAide is out everywhere in the world helping people live better.
Here’s today’s map of LightAide locations around the world. You may notice some ‘gaps’ in the countries that we serve. I don’t want to sound like we should be McDonalds or Apple in our world domination, but for sure – as a social good product, we should be in more countries. This is where I need your help – if you have friends or family or colleagues – send them an email, call them or connect with them on social media – tell them about LightAide.
Share with them: Lily LightAide Backpacking Program! This link has videos of children reacting to LightAide and demonstrates the capability of LightAide with different families around the United States. http://www.wonderbaby.org/articles/backpacking-lightaide-program
And maybe your friends are only in the United States? We’ve only shipped LightAides to 23 states, that’s 27 other states that don’t have LightAides. That doesn’t make me sad from a business perspective, that makes me sad from children being able to access learning, interaction modes, capabilities. We can’t have this.
So share with them: Lily LightAide Backpacking Program! This link has videos of children reacting to LightAide and demonstrates the capability of LightAide with different families around the United States. http://www.wonderbaby.org/articles/backpacking-lightaide-program
It was a great honor to win the Rising Star Award at yesterday’s Boston Children’s Hospital Innovation Summit. But NOW it’s show-time, we must help bring this innovation to the people who need it the most. Maybe you don’t want to share with your friends and colleagues, I’m not to proud to ask that you donate to the LightAide GoFundMe account so that we can purchase LightAides for organizations and families who need LightAide!
More information about LightAide:
Yesterday and today, I’m attending Boston Children’s Hospital Innovation Summit. So far, it’s been a fantastic mix of presenters with inspiring stories both from inside of healthcare and outside of healthcare. As a ‘NC girl’, I enjoyed especially the ‘what can surgeons learn from NASCAR’ talk by Dr Waters. It’s been all around fun, a lot of energy, passion and will to do awesome work for kids and families.
Why am I writing about this? I am receiving an incredible award. I’m humbled, I’m still stunned. You know of my journey – how I merged Alexis’ experiences into my work (see more: http://bit.ly/1e1qKoe and http://bit.ly/1toBeYL). I will be receiving the ‘Rising Star’ Award.
A Brief description about Rising Star Award:
- Nominees shall have accomplished an outstanding achievement in healthcare of unusual merit and independence of thought and originality that significantly impacts pediatric care, defined as care provided to patients under the age of 21.
I enjoy challenging myself to adhere to my planned remarks by posting them online. It’s a commitment to you that I won’t deviate wildly off script. 🙂
At this time 9 year ago, I was pregnant with twins and I’d never been a children’s hospital.
Kaitlyn, Alexis’ twin sister, died at 29weeks pregnant.
Alexis spent 2 ½ months in the NICU after being born at 37 weeks.
Alexis had 8 surgeries and we patented a device for Alexis to avoid having a trach, using CPAP at each night since she was 1.
Alexis’ little sister was born and had open heart surgery
Launch LightAide, a product inspired by the way Alexis sees the world.
At first, it was just a passion to make sure everything with Alexis’ medical care went well and sharing with families how we did that. Then, when she needed CPAP – figuring out a way that we could safely and smoothly adhere her CPAP without issues. Then, when she and her peers were having difficulty interacting with normal lights – identifying technology inside of Philips that could be helpful to them.
Having my kids has ignited a passion – combining my engineering, business and ‘mom-invention’ skills.
I can’t stop until every child that needs technology has it, available for them – if it’s LightAide, a CPAP, or room lighting to help heal and calm patients and their families – to give them a sense of normal. When Alexis visited Philips Lighting showroom in August 2010, her face lit up. Even people who were meeting Alexis for the first time – could see the transformation. She was seeing the walls for the first time, lit up in LED technology.
Wouldn’t you love to see a child’s face light up when he can make out the brightly colored lights?
Wouldn’t you be thrilled to see a child figure out cause and effect for the first time?
Wouldn’t you be amazed to see a child play with their sibling?
You can make a difference, by supporting technological advancements, putting LightAide into your hospital and changing the lives of children.
I hope you can understand how desperately parents and caregivers want to help improve healthcare. Please – let us. We’re not physicians or medical researchers, but we know our hearts, we know how important your work is, and we know how important it is to find every single way to improve care in the hospital and at home.
You can make a difference, by supporting parents and caregivers on their journey to improve healthcare. I don’t know where the next ‘Catherine Rose’ is – but she’s not far away. She’s juggling her roles and seeing the world through a different lens.
I recently turned 40, giving me a chance to pause and consider my journey. The health of my children means the world to me and they both inspire me everyday. My journey is just one of many caregivers around the world, working hard to do more.
I want to thank you for this award – it appreciates where my journey has taken me over the past 9 years – I’m eager to push for what I can accomplish over the next 40 years.
Sitting here at a Healthcare conference: MedCity ENGAGE!
ENGAGE is the one place that gets the entire ecosystem together to best understand the patient and consumer engagement trends that sit at the core of healthcare innovation and reform. You’ll hear from payers, providers, policymakers, health IT and beyond; we’ve gathered together the most innovative thinking to offer and discuss the latest strategies, ideas and solutions to one of healthcare’s greatest challenges.
Just heard inspirational talk from Aaron Sklar (former IDEO design guru now at Healthagen) – talking about how technology should fade into the background and how we can use design to engage better! Well, that was preceded by Merck’s Sachin Jain who discussed some powerful patient stories – showing how we have data we don’t use but should be used. I’ve simplified – but essentially thesis was that we have a lot of technology already and need to make better use of data and technology.
So I wanted to share my personal ‘circular’ / ‘technology’ story:
- Daughter had overnight sleep study at hospital
- Doctor calls from hospital to inform me about test results (called home phone, I’m traveling)
- Home voicemail transcribed and sent to me via email
- I called back the number listed by the doctor. Got robo circle for the department, voicemail transcription garbled doctor name.
- I called back the number listed by the voicemail – managed to get Doctor directly.
- Chatted about results and next steps.
- Emailed another doctor on our team to discuss more options for treatment.
- Remembered I forgot to ask about other specifics in the report.
- Emailed our local pediatrician’s office, who has direct connection to hospital
- Nurse said she could get report for me
- Nurse asked for my fax number
- Nurse faxes to husband
- Husband scans in the document
- I read the document while traveling and also forward to my sister (who is ER doctor for her opinions)
I’m thinking this could have been easier. I have a patient portal with my hospital . . . Sigh. One day, I see it possible that we can connect technology to save money, resources and unnecessary waste in the healthcare system.
In the meantime, I will work my hardest to get best care for my daughters’ health.
In September 2013, I helped launch an innovative lighting product. Who knew? It’s a quiet launch focused on a niche market – kids with visual impairments.
We knew the impact we would have on kids. I had seen it myself in my own two children. I was a believer. What we’ve done in the past year is help to create even more believers – people who can see the cognitive capability of children interacting with LightAide.
“Olivia has never truly had a toy that she has been attracted to enough to remember to play with. When she came home from school the other day, the first thing that she did was run to the LightAide. Cognitively, this modality had such an impact on her that she remembered. Wow, I have no words. I possibly just witnessed a miracle!” –Anna, Olivia’s mom
“Aly loved the LightAide immediately! She was very drawn to the light and movement. The switches helped with her purposeful movement by utilizing cause and effect. Using the LightAide has been an eye opener for me. I have seen the LIGHT. Lights are the key to unlocking my daughter’s learning potential.” –Brittany, Aly’s mom
We believe that LightAide’s success needs more believers. We’ve applied for a panel at 2015 SXSWedu to share our story, “Revealing Cognitive Ability in Visually Impaired”. We’re confident we have prepped a fascinating talk with great presenters – we’re really excited! One small little catch, we need your vote before September 4.
We’d love to have your help!