See examples of what folks are doing HERE
See examples of what folks are doing HERE
Coronavirus forced us to cancel all our 2020 Group Swim Events – but hydrocephalus patients and researchers need support now more than ever! That is why we are pleased to announce this ‘choose your own adventure’ event. Contribute and get involved HERE!
Just set a goal that you will accomplish between now and August 29th (the intended date of our Alcatraz Swim). You could run. Swim. Walk. Do push-ups. Pledge to read a certain number of books. Lose some weight. It doesn’t matter WHAT you do — so long as you are doing it in the name of the 1million Americans (and countless worldwide) afflicted with hydrocephalus.
For example, Pam “Gramma” Finlayson is determined that she will swim the combined lengths of Upper and Lower Suncook Lakes — nearly TWICE the distance of the Alcatraz Swim! Nina will train for and run a half marathon! Peter is committed to shedding 10 lbs. Get creative, get determined, and make a difference.
Once you’ve set the goal, reach out to friends and family and post the link to this page on social media asking for support. 100% of funds raised go to hydrocephalus research.
Make a donation yourself to get the ball rolling, and then you’re off to the (virtual) races! 🙂
Team Hydro is incredibly proud to announce an exciting research update!
Dr. Jennifer Strahle, recipient of a 2016 Innovator Award from Team Hydro, has been awarded a $2.4 million dollar grant from the NIH to work on Hydrocephalus. This award is a direct result of the data she generated using funds from Team Hydro and the Hydrocephalus Association, and is yet another example of our research investment thesis in action.
To learn more about Dr. Strahle and her research, see our interview with her below.
Dr. Jennifer Strahle is a practicing neurosurgeon and the current director of the Pediatric Neuro Spine Program at St. Louis Children’s Hospital. She is also an assistant professor at the Washington University School of Medicine, where she runs her own research laboratory.
In 2016, Team Hydro was proud to sponsor Dr. Strahle by funding an Innovator Award to investigate the role of iron in mediating ventricular injury in posthemorrhagic hydrocephalus. This seed grant has now born fruit, as the data it produced has resulted in a $2.4 million dollar follow-on grant from the National Institutes of Health.
We caught up with Dr. Strahle to hear about what brought her into Hydrocephalus research and to learn more about the exciting work going on in her lab.
TEAM HYDRO: Thanks so much for taking the time to chat with us! Amongst our grantees, you are one of a few who has opted for a dual-career as both a physician and a researcher. What made you want to become a surgeon-scientist?
Dr. Strahle: I have always had a fascination with the brain, dating back to my days as a neuroscience major in college. After college, I worked for two years in a research lab studying Alzheimer’s disease. Although I greatly enjoyed this work and felt like I had the potential to make a difference in people’s lives, it seemed that becoming a surgeon-scientist would allow me to be maximally impactful – being able to directly improve the lives of children with brain diseases while discovering new ways to treat or prevent these same diseases in my lab.
TEAM HYDRO: What motivates you to work on hydrocephalus specifically?
Dr. Strahle: Over the course of my lifetime, we have seen tremendous progress in cancer care, treatment of heart attacks, and organ transplantation. Yet hydrocephalus care has remained largely unchanged for the past fifty years. As a pediatric neurosurgeon, I see first-hand the devastating toll that hydrocephalus has on children and their families, and the enormous potential that improving care for these children can have for generations.
TEAM HYDRO: You certainly don’t have to convince us on that point! Thank you for working on this much under-appreciated condition. Could you tell us a bit about your current work in St. Louis?
Dr. Strahle: I split my time roughly equally between my pediatric neurosurgical practice at St. Louis Children’s Hospital and my lab at Washington University School of Medicine. In the lab, we are studying the role of cilia, tiny hair-like structures that line the ventricles, in the development of hydrocephalus after neonatal intraventricular hemorrhage. We are first seeking to more clearly understand the ways that the initial bleed leads to hydrocephalus, after which we hope to develop ways to minimize or prevent the damage to the underlying brain. My clinical practice focuses on hydrocephalus, brain tumors, and diseases of the spine. Running between the operating room, the clinic, and my lab can make for some hectic days, but the synergies between the different components of my job are energizing and make for a wonderful career.
TEAM HYDRO: What challenges do you see as a surgeon treating patients with hydrocephalus?
Dr. Strahle: As with any illness affecting very young infants, I view the most challenging part as helping patients and families cope with all the unknowns – infancy is a challenging time under the best of circumstances, and hydrocephalus specifically can be unpredictably variable in a way that causes enormous stress on families. From a more tangible perspective, having a shunt placed with the possibility of multiple revisions is a very real challenge for many children. My goal as a researcher is to eliminate the need for shunts for as many children with hydrocephalus as possible.
TEAM HYDRO: Eliminating the need for shunts is truly the ultimate dream in this field. As we work towards that goal, what are some of the big opportunities you see for future hydrocephalus research?
Dr. Strahle: As I alluded to above, the major opportunity in hydrocephalus research is to develop preventive treatments to eliminate or minimize the development of hydrocephalus. Our hydrocephalus researchers at Washington University are studying multiple mechanisms – iron metabolism, cilia injury, ependymal injury, and neural cell migration to name a few – that all likely play some role in the development of hydrocephalus and its coincident injuries. I don’t yet know which one of these pathways could ultimately lead to a cure for some or all children who would otherwise develop hydrocephalus, but I truly believe we will get there during my career.
TEAM HYDRO: Wonderful. One last question for our readers and donors: could you comment briefly on the role that grants like your Innovator Award play exciting new labs like yours?
Dr. Strahle: Support from the Innovator Award has been instrumental in allowing my lab to obtain preliminary data to apply for extramural NIH funding. With this initial support, we were able to identify several novel therapeutic targets within the iron handling pathway. This will be the focus of our upcoming areas of investigation and our NIH grant.
TEAM HYDRO: We sure are proud and grateful to be supporting researchers like you, Dr. Strahle! Thank you so much for all your work, and we look forward to continuing to follow your exciting career moving forward.
Labor day weekend may mark the end of summer for many folks, but for TEAM HYDRO it marks the beginning of two amazing events aimed at raising Awareness and Research funds to combat Hydrocephalus!
First up, on September 1 the Team will once again enter the icy waters of the SF Bay and Escape Alcatraz in the 2nd Annual Team Hydro Swim For Hydrocephalus! As most know, the Team already participated in the Sharkfest Alcatraz swim back in June of this year. But the work we are doing cant stop there while people are still suffering from this devastating condition — so we will hit the water again. This Alcatraz Swim, produced by and for Team Hydro, will certainly prove once again to be an exciting and inspiring event as one and all join together to fund hydrocephalus research. Team Members will range in age from teens to septuagenarians, and include NCAA champions as well as swimmers living with hydrocephalus. Swimmers will meet at 8:15am, and 0nland supporters can expect to see swimmers reaching the beach at Aquatic Park beginning around 10:30am. We cant wait to see you in San Francisco on Sept 1!
Raising research funds is the mission of Team Hydro so swimmers, volunteers, and on-land supporters alike have been working hard to acquire donations in support of their Swim for Hydrocephalus. Thanks to the generosity of Genentech and other private funding, 100% of these donations (along with all registration fees collected) will go directly to fund hydrocephalus Research!
Following the Alcatraz Swim, Team Hydro members will gather across the continent the very next week, to cross the Boston Harbor on September 9th! Joining this swim will be students and professors from Harvard and MIT, family members of people living with hydrocephalus, and even a grandmother.
Team Hydro is working so hard in order to fully fund more important research aimed a finding a cure for this condition. Hydrocephalus is the cause of more children’s brain surgeries than any other condition, and affects people of all ages from infants to oldest adults!
Can you help us FUND a CURE? PLEASE donate here!!
Despite soaring temperatures followed by thunderstorms that closed the pool for the afternoon session, the Penguins of Little Falls swam today for hydrocephalus!
And boy, did they swim — over 65 miles, in fact! The team got off to an early start in this their 7th amazing swim for hydrocephalus. Swimmers ranging from age 5 to 18 swam as far as possible in hopes of finding a cure for the life-threatening condition which took the life of a former teammate.
Each swimmer wore a bracelet honoring a person with the condition as inspiration to help them keep going when the going got tough, just as hydrocephalus patients must do every single day.
These dedicated and compassionate swimmers also made cards in the sweltering heat for hydrocephalus patients which will be distributed to patients in hospitals across the country.
When the pool closed early due to storms, the team took their efforts to a local Chipotle where they continued to raise funds for important research!
Team Hydro couldn’t be prouder to be affiliated with the incredible Penguins of Little Falls. We thank each an every Penguin, as well as their coaches, parents, friends, donors, and on-land supporters for the great work they continue to do to ensure that one day a cure will be found for this difficult condition. Team Hydro would especially like to thank team parent, Sarah Farnsworth, who once again organized this incredible event!
If you would like to donate to the cause and support the Team’s effort, you can do so at https://donate.teamhydro.org/SwimsForHydro2018
Go Team Hydro!
Let’s Fund a Cure!
With Memorial Day behind us, summer is in sight!
And of course, Team Hydro is hitting the water with a full schedule of events aimed at finding a cure for hydrocephalus !!
Team Hydro will open our season on 2018 June 8 with our annual participation in the Alcatraz Sharkfest Swim!! Almost 100 swimmers will be proudly wearing a Team Hydro cap as they swim from Alcatraz Island to San Francisco in the is always challenging 2 mile swim!!
Swimmers will be jumping off the ferry at 8:50 am and braving the freezing cold and turbulent waters of the bay in an effort to fund a cure for an even more difficult and life-threatening medical condition! Swimmers who have not yet set up a fundraising page can do so HERE! Make your swim count and raise funds for hydrocephalus research! Join the team before and after the event at the Team Hydro banner to make new friends, get fired up for the swim, and of course grab your official race-sanctioned Team Hydro swi
Next up will be the 3rd Annual Dolphin Dash for Hydrocephalus Research on June 23rd!! This amazing event hosted and organized by the Dorset Dolphin Swim Team of Marietta, Georgia will consist of age-group swimmers (and any willing friends and family) swimming as far as they can during the morning of June 23rd in order to raise research funds.
The Dolphin Swim Team seeks to honor of all people with hydrocephalus, but is especially mindful of 3 special young people as they swim for research–Teammates Lilly B and Parker, as well as Charlie, (the nephew of the team’s coach) who all are currently living with shunted hydrocephalus!
This year, the Dolphins have invited swimmers from other teams in their league to join them in their quest to raise research funds for hydrocephalus!! Team Hydro could not be more proud of our Dolphin Dash swimmers, donors, and on-land supporters!
For More information on the 2018 Dolphin Dash, or to donate to the cause simply click HERE!
Team Hydro is also proud to announce that the 7th Annual Little Falls Swim for Hydrocephalus— the Penguin Plunge— will tamp place on July 3!! This incredible event, in Bethesda Maryland features the Mighty Penguins of Little Falls Swim Team who, have already raised tens of thousands of dollars for hydrocephalus research. The Team swims in honor of former teammate Kate Finlayson who passed from hydrocephalus at an early age. Team Hydro is amazed and grateful to the Penguins for their ongoing support of hydrocephalus research. We ARE making a difference, one stroke at a time!
Team Hydro will then host a second Alcatraz swim on Saturday, September 1. This special event will be open for registration soon! So stay tuned!
Team Hydro will round out its 2018 season in September by taking part in the Boston Harbor Swim for Hydrocephalus on September 9. Swimmers (or VOLUNTEERS) interested in participating in this event can sign up on the Sharfkfest site — Be sure to check the TEAM HYDRO BOX– sign-up HERE.
Team Hydro looks forward to another amazing year of raising funds for hydrocephalus research!
We remain grateful to ALL our swimmers, donors , and on-land supporters!!
And REMEMBER–you don’t have to be a swimmer to help the cause– ANYONE can raise funds for hydrocephalus research!
Help us FUND a CURE for this debilitating and life-threatening disease!
Set up your own fund raising page HERE!
Team Hydro, and the over 1 million Americans currently living with hydrocephalus–THANK YOU!!
See you in (or around) the water this summer!!
We are thrilled to announce that Dr. Michael Piper — sponsored by a Team Hydro seed grant — has won a $500,000 award from the government of Australia to expand his research on the molecular mechanisms of Hydrocephalus. This exciting progress — and 20:1 “return” on investment for Team Hydro — is the latest of several examples of Team Hydro seed grants that have collectively bloomed into several million dollars of public funding. Taken together, this success is a strong testament to our research investment model.
Research with a cure in mind
How — exactly — does Hydrocephalus arise? What are the molecular mechanisms that steer the development of a healthy brain, how do they break down in our beloved patient’s brains, and could we intervene to tip the balance back towards health? These are among the questions that work like Dr. Piper’s seeks to address.
When Dr. Piper applied for a Team Hydro/HA grant in 2015, he had conducted preliminary experiments which led him to believe that a transcription factor called NFIX might be a key player in the process through which young babies’ brains finish developing after birth. More specifically, he suspected that reduced NFIX might disrupt the migration of radial glia stem cells in the lateral ventricles (the part of the brain that produces most of our CSF, the “hydro” in hydrocephalus). By developing a special mouse that lacked NFIX — and new tools to study it — Dr. Piper proposed to paint the picture of how stem cells relied on NFIX. In so doing, he argued, he could gain insights into how hydrocephalus develops and perhaps guide interventions that could ameliorate its effects. Given his proposal, we were eager to see what he could find!
In the past several years, Dr. Piper’s theories have held up! In one recent paper in the journal Neural Development, the lab published the results of the very experiments Dr. Piper proposed to us in 2015. Among (a bunch of!) other results, he included one picture that our readers may appreciate. See the large black hole in right side of the image below? That is hydrocephalic fluid filling up the ventricles in the mouse without NFIX! Dr. Piper’s experiments documented this process in rich detail, AND revealed a new molecule that appeared to reverse the effect!
A bright future ahead
Given this success, it is unsurprising that the Australian government has agreed to extensively fund Dr. Piper’s lab to further test and expand these theories and their relevance to hydrocephalus. And given that the receipt of large public research grants is the lifeblood of academic research labs, Dr. Piper is well on his way to a long and highly productive career in this space! As he does so, the world will not just benefit from his work, but the work of all the students who he trains to be hydrocephalus researchers.
Ultimately, Team Hydro’s grant will be a small drop in the bucket of funding that Dr. Piper will leverage in his research on hydrocephalus. However, particularly these days, it is all-but-impossible for researchers to receive major public grants without the extensive preliminary data made possible through seed grants like Dr. Piper’s Innovator award.
At Team Hydro, we are dedicated to continuing to support promising researchers like Dr. Piper, so that they and their trainees may find firm initial footing within the hydrocephalus space. In doing so, it is our hope that these good men and women will continue to work on hydrocephalus until a cure can be found!
We aren’t done yet!
Care to support more revolutionary researchers like Dr. Piper? Visit donate.teamhydro.org/ !
As always, we continue to underwrite our own overhead, so that 100% of donations received at Team Hydro are used to fund cure-focused research in Hydrocephalus.
Thank you, Dr. Piper! And thank you to all the swimmers and donors who make Team Hydro possible.
Go Team Hydro! Find a Cure!
We recently met Tom Coury, a rehabilitation physician, triathlete, and recent father to a daughter with hydrocephalus. His daughter Amelia received her first shunt at 17 days old, and Tom was kind enough to reach out and share their story. He’ll also be swimming Alcatraz with us this summer!
We are so touched and grateful to have the Coury’s as part of the Team Hydro family. Their story, still just beginning, already captures so much of the uncertainty that comes with a diagnosis of Hydrocephalus. By the same token, the strength, optimism, and indefatigable resolve of Amelia’s parents speak to the very best of humanity. Taken together, this uncertainty and this resolve embody exactly why we do what we do at Team Hydro.
We love you, Coury’s! Go get ’em, Amelia. We’re cheering for you.
Amelia’s Daddy’s Log
6/18/2017 – I’m taking a shower, and Heidi tells me the best Father’s Day news I’ve ever received. She is pregnant again. This will be Baby #6. See, we have a baby around every 3 years. We’ve had a baby in 2003, ‘06, ‘09, ‘12, ‘15, and now 2018. The birth order so far is B – B – G – G – B. I ask Heidi to keep the sex of the baby from me. We had always known prior to birth, but I had never been surprised. She was good to keep the surprise from me right up until the birth.
12/7/2017 – Heidi had her second ultrasound. For background, our last two births have been at TMC Birthing Center with nurse midwives. We’ve found that the birthing center provides a good balance between over- and under- medicalizing the process of childbirth. Our last baby came out at 10 lbs 2.5 oz. Heidi did that at the birthing center without an epidural.
The initial ultrasound this pregnancy showed everything as normal. But due to her age (38), the midwives recommended an additional ultrasound. This second one was done at 28 weeks. This time, the measurement for the lateral ventricles was 10.3mm (upper limit of normal is 10mm). This put the baby in the category of ventriculomegaly.
I went into a small panic. My head began to race with thoughts of surgery after surgery after surgery, and shunt after shunt after shunt. Thoughts of infections, and explants, and wounds. I’m a physician who specializes in Physical Medicine & Rehabilitation (PM&R or physiatry) and I have taken care of several patients over the years with shunts. The patients I see never seem to do well. The shunts are continually failing, and the patients seem to be in the hospital multiple times a year. One of my patients has over 20 no-shows to her clinic appointments with me, the vast majority of which are due to her being in the ER or hospital. My role in her care is primarily pain management.
1/10/2018 – Another ultrasound is taken, showing the ventricle size at 10.3mm (no change). I take a deep breath in. Perhaps this is one of those abnormalities that are never found unless you look for them. People walk around all the time with unusual this or that. Maybe the ventriculomegaly will self-correct. In fact, didn’t I read somewhere that enlarged head circumference is possibly a weak marker for autism? We already have two kids on the autistic spectrum. Yep. This is, as a pediatric neurologist once said about my oldest, while looking directly at me, Familial Macrocephaly.
2/7/2018 – Anther ultrasound is taken. The ventricle measurement has increased significantly. This is no longer ventriculomegaly; this is hydrocephalus. At the time of the ultrasound, the technician had the Maternal Fetal Medicine specialist do a quick consult. She recommended we get in with “neuro” soon after the birth (Was that neurology or neurosurgery? Somehow my brain skipped neurology and went straight to surgery.) That evening, I spoke with the MFM specialist for about an hour about hydrocephalus, what to expect, and where to go from here. At this point, we were no longer in the realm of the birthing center. We would be delivering at TMC at 39 weeks.
2/19 – I cleared my schedule expecting her induction and delivery to go quickly. What I didn’t expect was that TMC was so busy there was no room for us at the inn. We were initially supposed to be called at 5:30 in the morning to come in. We got the call at about 10:30 that night. The induction was started just before midnight.
2/20 – I enjoy the birthing center experience, but that’s a lot more work for me. At the hospital, she gets an IV, an epidural; we turn on some TV, kick back, and wait for the magic to happen. We asked for the Neonatologist to do a consult. Obviously the NICU was pretty busy, because he didn’t come around until about noon. He again went over hydrocephalus, what to expect, etc. He left, and the nurse midwife checked Heidi again. She saw the baby’s head, so she figured it’s time to push. The plan was to have the NICU on hand in case there was any distress. Heidi gave about 4 good pushes in a row, and then took a deep breath, ready to start the hard labor. That’s when the midwife handed her a 7lb 11oz beautiful baby girl (with a big head). The baby was just fine. She went straight to mom. The NICU nurses looked confused and asked, “Why are we here?” We excitedly shared the news with the rest of our family and friends that Amelia Margaret Coury was here, and she was rock solid stable.
2/22 – Heidi and Amelia got to go home. Prior to discharge, Amelia had a post-natal brain ultrasound. I totally geeked out, being able to see so many brain structures that are normally only visible with an MRI. (Baby skulls are not hard bone yet, so the ultrasound can peer down pretty far, though not as far as MRI.) Her scan showed a Grade 1 intraventricular hemorrhage (bleed) on one side and a Grade 2 hemorrhage on the other. We were all a bit puzzled, as IVH is normally a complication of premature birth. But Amelia was a full-term, good sized baby. The plan was to go home and follow up with her pediatrician, and get a referral for pediatric neurology.
2/26 – Her pediatrician, Dr. Carl Roberts, checked her out and felt she looked good. He made the referral to pediatric neurology and ordered a follow-up ultrasound.
3/5 – The follow-up ultrasound showed her ventricles had enlarged again. Dr. Roberts gave us the results on the phone.
3/6 – Her fontanelles began to bulge. It looked like a goose egg on the top of her head, like when you smack your head on something hard. Dr. Roberts made the call to Phoenix Children’s Hospital neurosurgery team, which is the pediatric division of Barrows Neurologic Institute.
3/7 – Heidi and Amelia (along with my parents) got to meet Dr. Taryn Bragg for the first time. Amelia’s head circumference had not changed much from Dr. Roberts’ visit. She ordered an MRI and told Heidi to plan on surgery the following week. I spoke with Dr. Bragg for about an hour that evening. Amelia’s presentation was not clear. She had the hydrocephalus, but she also had a very large posterior cyst, which appeared to be communicating with the ventricles. This cyst could be putting pressure on the posterior brain structures (cerebellum and brainstem). She told us to watch for signs, such as sun setting eyes, projectile vomiting, or lethargy. I cleared my schedule for the following week.
3/9 – I came home from work. This was a Friday afternoon. I held Amelia in my arms and looked in her eyes. Something wasn’t right, but I couldn’t quite explain it. She had disconjugate gauze (the eyes look in different directions), but in brand new babies, this can be normal. However, it also could be due to compression on the parts of the brain that control the muscles of the eye. I took some videos to send to Dr. Bragg. Later, Heidi was changing Amelia’s diaper, when her eyes started to set. Heidi got scared. We immediately dropped our plans for the evening and headed straight to Phoenix Children’s.
3/10 – Amelia had her VP (ventriculoperitoneal) shunt placed. Dr. Bragg elected to place a nonprogrammable, medium pressure shunt made by Medtronic. The surgery went well. We got to visit with Amelia while she recovered in the PACU and awaited a bed in the hospital. Her bandage wasn’t sticking to her head, so Dr. Bragg had fashioned a big, beautiful coban bow for her. Her vitals looked good and she was resting.
As part of the normal post-surgical protocol, at one point the nurse checked her eyes for a pupillary reflex. When you shine a light into one eye, you should see both that eye and the other eye constrict to adjust for the light. Amelia’s eyes didn’t respond. At all. Another nurse came by to check, and they didn’t respond. I checked them myself, and they didn’t respond. The nurse called Dr. Bragg who ordered a STAT CT of her head. The CT was normal. We had no idea why her eyes were not responding.
She was taken to the NICU. This day took the lead as the scariest day of my life as a father, just barely passing that time Heidi was in my truck with my two baby boys and was hit by a car. I waited in the ER for 45 minutes for the ambulance that day, and was meticulously picking out pieces of glass from their hair in the bath that night. This day was scarier than that day.
The NICU staff was great. In fact, the whole staff at PCH was great. Pediatric hospitals are magical places, where everybody is there because they want to be there. From techs, to nurses, to docs, to staff, there wasn’t a grumpy face in the place.
Heidi and I hadn’t slept more than a few hours the night before surgery. She was put in contact with Ronald McDonald house so we could take turns getting some shut-eye. I went off to dinner at the cafeteria not knowing what we were dealing with. Was there permanent brain damage? Was this just a delayed response to anesthesia? Was Amelia blind? I started to doubt my memory of her vision. I had only known her for 17 days, but maybe I was wrong to think Amelia was looking at us. I pulled out the videos I took of her the day before. No, in fact, Amelia was looking right at me as I held her. Her eyes constricted and dilated with the light as I moved. Her eyes were working, less than 24 hours prior. Something had had happened.
I wanted to do something for Amelia. I wanted to help in some way. I felt helpless. Sure, I could be a good father. We would take good care of her, no matter what the situation would be. If we had a blind child, then we would deal with that. But maybe there was something else I could do. Maybe I could give back in some way. One of my hobbies is racing triathlons. Maybe I could put together a race team, like they do for breast cancer and blood cancers. I even thought of a great name – Team Hydro. Excitedly, I searched for that name, and discovered that such an organization already esisted. And this wasn’t some flash-in-the-pan charity. Their funding had already yielded legitimate bench (basic science) and translational (lab-to-clinic) research.
Heidi went to Ronald McDonald house first. Fortunately, she had pumped plenty of breastmilk to get through the evening. Unfortunately, she left the breast pump at the hospital, so I knew she would be back in the middle of the night.
3/11 — I’m fuzzy on the details (sleep deprivation will do that), but at some point in the middle of the night, Amelia’s eyes started to respond. It was a weak response initially, but it was there. Heidi came back around 2 AM and we switched out. By the time I got back to the hospital around 6, her eyes were back to normal. We still don’t know what happened or why. But we were grateful they were back. As Heidi drove part of the way home, I sent a text to Dr. Bragg thanking her for her work. She responded kindly, and added, “drive safely”. It occurred to me that relative to the drive between Phoenix and Tucson, a VP shunt placement is a pretty safe procedure.
3/20 – Dr. Roberts evaluated Amelia and gave her an all-good bill of health.
3/22 – Follow-up with Dr. Bragg and a repeat MRI in Phoenix. The posterior cyst membrane appeared to be descending along the brainstem. She recommended watching clinically and follow-up in a month.
3/24 – Her fontanelle appeared to be bulging again. We worried about shunt failure. Dr. Bragg recommended keeping her head upright.
3/30 – Amelia gave her mom some projectile vomiting, exorcist-style. Heidi was rightly concerned. We now noticed that her fontanelle was quite sunken, and that the skull bones were even overlapping a bit. I was worried about over shunting. Dr. Bragg recommended keeping her head lying flat.
4/2 – Amelia gave her mom another projectile vomit.
4/3 – One more episode of vomiting, and Heidi took Amelia to Dr. Roberts office. Dr. Roberts checked her over for non-neurologic sources, and felt that all was fine. It must be coming from her neurologic situation.
4/4 – Amelia vomited again. Heidi called Dr. Roberts, who promptly called Dr. Bragg. I went to work on Friday, 4/6, fully expecting that Amelia would have her first revision the next day.
4/6 – Heidi took Amelia up to PCH for a new MRI and a visit with Dr. Bragg. The imaging looked good. No surgery was recommended, and follow-up made for one month.
At this point, there are more questions than answers. Why are Amelia’s fontanelles shifting so quickly with positional changes, yet the MRI does not show a dramatic change? Will she need a revision before her fontanelles close at 18 months? Why did her eyes not respond, and should we be concerned about anesthesia in the future? And why does she have hydrocephalus in the first place? We haven’t yet seen a pediatric neurologist, but Heidi made an appointment with one. Dr. Bragg mentioned that this might be something called a Dandy-Walker variant, which is probably defect in neural tube formation.
4/7 – I got to meet Sam and Peter Finlayson on a conference call today. Together, they formed Team Hydro, and their family sits on the Hydrocephalus Association board. I’m excited to have these guys to lean on, (and to give back to as well) as we continue this journey.
Amelia is developing well. She looks at her daddy and mama, and is beginning to coo. She has the beginnings of a social smile. She can occasionally bring her hands to her mouth to suck on her fists. Her pupils react and accommodate well to light. She has other normal baby issues – reflux, cluster feeding, wanting to be held all the time, that the rest of our kids have been through. It’s 10:40 PM.
I’m going to go give all of my kids a kiss goodnight.
EXCITED TO HAVE YOU ABOARD, TOM! WE LOVE YOU, SWEET AMELIA!