Cooling cap update and fun video

Well, as Aaron approaches his 1st birthday and does something new everyday, I am reminded constantly of where we were just a little over a year ago. I remember that last month of being pregnant, and everything that followed...
I recently emailed the wonderful physician who runs the cooling cap program at the hospital Aaron was transferred to in order to find out what we can do to help the program. Here is his response:

Lauren: It's good to hear from you. We continue to cool babies with suspected HIE, averaging just over one a month. Former clinical trial sites in North America, Europe, Australia, New Zealand (and I think Israel too) are generally offering cooling using their former study protocols. Nationwide, beyond the former study centers, I suspect there is increasing use of cooling, but it is hard to get good data on this. I recently asked the Vermont-Oxford Neonatal Encephalopathy Registry, which tracks use of cooling, if they have up-to-date data for 2008 but haven't heard back yet. Within the region we've seeded centers in Grand Rapids and South Bend. Further afield I've helped centers in Montreal (which serves most of the province of Quebec), Honolulu (covering all of HI) and Kansas City get programs started.
You'll be interested to know that results of two more clinical trials were presented at the meeting "Hot Topics in Neonatology" in DC in early December. These European trials (the TOBY Trial and the NeoNeuroNet trials, both of whole body cooling, corroborated the results of the first 3 trials, i.e. cooling decreases both death and the burden of disability in survivors, but there is still room for improvement. We are getting the sense that it's probably not the mode of cooling that matters (i.e. head vs. whole body), as much as just getting them cooled. One more major randomized trial (ICE, that stopped enrolling July 2007) will report results about a year from now. That will be the last of the trials in which cooling is compared to a non-cooled control group, except for an NIH network trial that is evaluating the utility of cooling in babies who present later than the currently accepted time window of <6 hours from birth. They are recruiting babies that for whatever reason don't show up until 6-24 hours after birth. We hope to join that trial network this year.
Where is cooling going from here? There are a couple of directions in research, both focused on improving on the results of cooling.:1. Lab: (Pediatric Neurology) and I are doing experimental work in our lab evaluating combination therapy with early post-HI prophylactic anticonvulsant and cooling (several different FDA approved drugs), to see if there are combinations that are better than either drug or hypothermia alone. This is funded by a 2-year NIH grant and some gift funding from a family of a cooled baby from several years ago. The hope is that this work will help select the best candidate anticonvulsant for a human clinical trial of the same concept. Other groups around the world are evaluating other drugs in combination with hypothermia.2. Clinical: Pediatric Neurology and I have begun a study (funded it part by a grant from the Child Neurology Foundation) to simultaneously evaluate EEG activity (background and seizures) and brain metabolism (using a new monitoring modality call Near Infrared Spectroscopy or NIRS) throughout cooling and re-warming, to determine whether these techniques put together can enhance our ability to predict later outcome while we are still in the course of cooling. The idea is that if we can predict a group of babies who are destined to not do well with the current 72 hour cooling protocols, we could in the future propose new studies in those babies, for example comparing outcome after 96 or 120 hours of cooling vs 72 hours. The Child Neurology Foundation funding is sufficient to pay for the EEG and NIRS monitoring in the neonatal period, but we are now writing grants to seek funding for the 18 month developmental follow-up of these babies. So that is an area in need of support.
Please feel free to share the above update with your support group. I don't know everything that is happening but I am pretty well connected with the current state of cooling.
On your final point, we were glad to be able to help, and thank you for entrusting Aaron's care to us, at a very difficult time, and with a very new technology.

So, I am currently looking into ways to help fund a small part of this research, now and in the future. Research in Pediatrics is generally very hard to do, and actually does not get the funding you might expect. As you can imagine, it takes a leap of faith on the part of researchers, and more importantly parents, to even allow the research to be done. (Can you imagine the first brand new, shell-shocked parents who were offered the option of basically freezing their tiny babies with no idea what side effects or outcome there could be?!?) Then, you have to find ways to pay for it. And the basic science, non-glamorous, lab research is so important. Before the cooling technology made it into any NICU, lab animals were deprived of oxygen, cooled, and then studied. I am not sure, but I am guessing some of them were sacrificed to study the effects on the dissected brains. This is the reality of scientic progress and I am so grateful for all of it. I don't believe Aaron's story is possible without it. So, I will be dedicating a part of my life from now on to try and promote this cause. I think there is so much potential. Perhaps cooling may help babies who have a neurologic insult in the first month after birth (like a near crib death or shaking or an undiagnosed heart defect). Also, I think there is a lot of room for spreading the use of the technology to more kids.

Here is a new video of Aaron and Sam playing one of their favorite games. It makes me a nervous wreck, but they have so much fun. I think I need to get Aaron a bike helmet...