At CDH International, we know that our families of survivors and expectant families are very confused and concerned about the effects COVID-19 (Coronavirus) could possibly have on our children.
Our President, Dawn Ireland, posted this yesterday on social media for our volunteers:
“Remember that we lead by example.
And we have been fighting viruses, flu, RSV, chicken pox, whooping cough, etc all year long, every year. We need to stay calm, keep our kids isolated and continue to be the strong, pro-active and anti-germ warriors we always have been.
Just as we’d mama (or papa) bear someone for coming near our kids with any cough or other medical issue. Use the same protectiveness we’ve always used. This has always been our life“
We will all get through this together. We have been living in isolation from viruses since we heard those 3 dreaded words “Congenital Diaphragmatic Hernia”
We are here for you.
The CDH Forums are open 24 hours a day.
The Facebook Groups are also available.
You can talk, vent, question as much as you would like, confidentially. There is no misinformation or medical advice allowed in our groups for your child’s safety and your own sanity. We keep a safe, supportive environment for families at all times.
At CDHi, we will not give you medical advice. We will however steer you to clear, accurate information and we share this information from our friends in Texas:
A letter from Dr. Matt Harting of the University of Texas in Houston and the CDH Study Group and NP, Ashley Eubank,s to CDH families –
The rapid spread of CoVID-19 (CoronaVIrus Disease 2019; a novel strain of the traditional coronavirus) has created concerns worldwide. The ongoing spread of this infectious disease has, for the most part, spared infants, children, and adolescents. But as all of us in the CDH community know, our kids can be a little bit different. Many of you are asking, “I have a child or family member with CDH, how concerned should I be?”. To be clear, given the complete novelty of the specific virus, the relatively small number of patients that have been affected, and the generic infrequency of CDH, nobody knows what specific ramifications this virus may or may not have on such a unique patient population as children with CDH. Here are a few overarching principles to keep in mind:
1. CoVID-19 seems to be impacting children at lower rates than adults, and those who contracted the virus seem to have a generally mild course.
2. The symptoms that kids who contract CoVID-19 may experience are those you have generically heard – fever, cough, congestion, rhinorrhea, and or sore throat.
3. Unfortunately, all respiratory illnesses seem to have a more significant impact on infants, children, and adolescents with CDH. Therefore, it is my opinion that patients with CDH should consider themselves in a baseline higher risk category.
4. Transmission is noted at this time to be via respiratory droplets. Therefore, simple measures are important and can make a big difference in minimizing the risk of contracting the disease while also minimizing the spread of the disease. These include: frequent handwashing, minimize face touching and exchange of bodily fluids (has anyone making these recommendations ever had a 2-year-old?!), and geographic/spacial distancing.
5. If you are concerned that your child with CDH may have contracted CoVID-19, or if they are simply experiencing the symptoms noted above, it is advisable to touch base with your pediatrician and/or a multidisciplinary CDH clinic (preferably via virtual care or telemedicine). Testing for children occurs in the same way as testing does for adults. If your child with CDH experiences more significant symptoms, including increased rate of breathing, difficulty catching their breath, chest pain, or other progressively worsening symptoms, please seek medical attention urgently.
We remain hopeful that, with vigilant action, the spread of CoVID-19 is minimized. You should know that both adult and pediatric hospitals around the country are working diligently to prepare for this rapidly evolving situation and that time, treatment, and, eventually, a vaccine will combat this virus. Ashley and I will continue to pass on the best and most accurate information available, as they specifically relate to CDH. Please feel free to comment and reach out with questions.
– Matt and Ashley
* information obtained from the American Academy of Pediatrics (AAP; www.aapnews.org) and the Centers for Disease Control (CDC).