VACTERL is not just an acronym, but rather it represents parts of the body or internal systems that are congenitally malformed in utero and typically present together for hundreds of thousands of babies each year.  VACTERL stands for (V)ertebral, (A)nal, (C)ardiac, (T)racheal, (E)sophogeal, (R)enal, and (L)imbs.  Each child diagnosed with VACTERL either at birth or in utero will present with a minimum of 3 congenital malformations represented by the letters of the acronym.  

My grandson was born with the form of VACTERL called VATER.  VATER is a shortened acronym for babies who have all but the cardiac and limb differences.  This petition is personal to us and countless others who face similar challenges.  Many patient's families, like ours, have never heard the term VACTERAL/VATER until the moment it's diagnosed.

For my grandson, this word VACTERL was first acknowledged when he was born premature at 33.5 weeks and presented with multiple malformations within moments of his birth, which were all a surprise and not detected in the multiple ultrasounds from which he was viewed in utero.  This is very common with VACTERL/VATER...it catches many parents and families off guard.  He presented at birth with:

(V)ertebral structures missing;

a missing (A)nus;

a malformed (T)rachea;

an incomplete (E)sophagus;

a dysfunctional (R)enal system (1 kidney which was malformed and dysfunctional on it's own).

VACTERL/VATER is currently grouped with other rare diseases, and historically has been recognized on National Rare Disease Day each year on the last day of February. However, this association is not a disease itself but represents specific groupings of congenital malformations which currently have no identifiable cause.

It's time we separate it from the umbrella term "rare diseases" and give it its own recognition. A dedicated annual awareness day for VACTERL/VATER will help increase understanding about these conditions among medical professionals and the general public alike.

This distinction can lead to better support for families affected VACTERL/VATER, more focused research efforts to identify causes and more comprehensive treatments, as well as improved healthcare policies that cater specifically to those living with VACTERL/VATER.  To date, there is no identifiable cause of VACTERL/VATER, however it's one of the most complex health experiences for patients and their families, with very little dedicated support and even less understanding of how each physical difference is related.

Like many VACTERL/VATER babies, my grandson experienced his first major surgery at less than 12 hours old, spent seven consecutive months in the NICU, has experienced over 30 surgical procedures at five years old, and has spent his life in multiple-days-a-week physical therapy, occupational therapy, and speech therapy.  And his experience is one of the least complex cases....many children born with (C)ardiac differences and (L)imb differences experience even more complex procedures and therapies, and require even more intervention.

As I'm sure you can understand, families of those affected by VACTERL/VATER want more dedicated awareness, more dedicated research, and more dedicated solutions.  There are just a small handful of physicians hospitals, and clinics who holistically treat VACTERL/VATER not just in the USA, but globally...most patients will be treated for each independent difference or malformation rather than being treated as a whole, which often complicates their outcomes and experiences, as so many of these areas of malformation affect the others in intrisic ways.

While my grandson has been able to overcome a host of the medical issues that he has experienced, his life will always be affected by VACTERL/VATER in some way:  he'll likely need additional surgeries throughout his life, will be more prone to pulmonary/respiratory distress, and have some physical limitations due to his missing vertebral structures.  But he has survived.  Unfortunately, many children do not survive VACTERL/VATER.  And even one child lost to this association is one too many.  In this day and age, there's no good reason to not understand how to reduce the instance of this diagnosis (or diagnose it in utero rather than at birth), how to properly and holistically treat this diagnosis, and how to give children the best outcomes possible.

There are far too many gaps in the data around this diagnosis.  For instance, current estimates place the birth prevalence of VACTERL association at about 1 per 10,000 to 40,000 live births. The true frequency may be difficult to determine because different diagnostic criteria are used in different studies.  In 2024, that's unacceptable...but it also is proof positive of a need for more awareness, additional research, and better patient experiences.

Some have questioned why VACTERL/VATER needs its own day if it's part of the larger Rare Disease Day initiative.  Just like "cancer" has support groups and awareness initiatives, so do very specific types of cancer with the purpose or raising awareness for the overall cancer population as well as very specific diagnosis, separately. They aren't in competition with one another. They are complimentary to one another. I'd be very surprised to see anyone who finds a VACTERL awareness day to be in competition with Rare Disease Day or similar initiatives. There aren't "sides" to this initiative. It's meant to uplift the VACTERL community with its own recognition and support.

Let's raise our voices together for this cause - sign this petition today to establish July 30th as VACTERL/VATER awareness day!