Introducing CDH to Your School and Teachers

What is “typical” or “normal” for a child with CDH at school?

The short answer is anything is possible and the sky is the limit for a child born with CDH, but they will do it on their time table and they may need more support than children who are born typically healthy. This page is to be used to educate school principals, school nurses, classroom teachers and PE teachers/coaches on how a child born with CDH may have to navigate school a little differently than their typically healthy peers.

About CDH:

• Congenital Diaphragmatic Hernia (CDH) occurs when the diaphragm fails to fully form, allowing abdominal organs to move into the chest cavity and preventing the lungs from having enough room to grow.

• The illustration above shows what our baby’s anatomy likely looked like when they were born. Since birth the hernia has been repaired, but our student has faced many challenges. Our child’s internal anatomy is still atypical and because of that the school will need to document that in case emergency services were ever needed for our child.

• CDH occurs in 1 in every 2500 babies.

• CDH is as prevalent as Spina Bifida and Cystic Fibrosis.

• The mortality rate for CDH still hovers around 50% internationally, but many advanced children’s hospitals have far better outcomes for children born with CDH.

• Until a specific cause is determined, CDH cannot be prevented.

• Many CDH cases can be detected with an ultrasound, sometimes as early as 16 weeks. Early detection is key in good long-term outcomes for CDH. This allows for parents to look for the best medical team, and possibly relocate far from home, to give their baby the absolute best possible chance at a typical childhood that includes traditional schooling.

• There is no “typical” CDH path. Each child born with CDH may face significant pulmonary and respiratory issues. A child born with CDH may have digestive issues like severe reflux or require tube feeding. These issues may be resolved in early childhood or may still be issues at the start of elementary school.

• Many children born with CDH have developmental delays that resolve themselves before school age, but in their lifetime it is very typical for a CDH family to work closely with physical, occupational and speech therapists to prepare their child for school and a happy childhood.

• Most children born with CDH are ventilated as soon as they are born. Some children born with CDH require advanced life support called ECMO (extra corporeal membrane oxygenation). ECMO does the work of the heart and lungs for the sickest CDH babies. ECMO carries a risk of brain bleeding.
  

How can our school support our CDH family?

1. Please keep the lines of communication open always. We want our child to have a typical school experience because they are capable of that. Please understand they may also have some physical limitations. Please help us understand what documentation we need to provide to the nurse, teacher and physical education department about any daily medications and physical limitations our child may have.

2. Please allow us to set up a conference at the beginning of each year with the administrators, class room teacher, school nurse and school counselor to discuss any updates from the previous school year and any key issues we feel need to be discussed.

3. Please allow us to meet with all PE teachers/coaches each year to discuss any physical limitations our child may have that need to be monitored closely during strenuous physical activity or extreme temperatures. We want our child to enjoy PE and participate in physical activity safely. We believe educating all PE teachers/coaches on our child’s needs and our expectations sets us all up for success. Please make sure any PE substitute is aware of the parameters we agree upon.

4. Help us understand how we can facilitate collaboration between the school and our private therapists and medical team when necessary.

5. For those of us new to elementary schools, please help us understand if we need to develop an IEP or 504 Plan to document allowances and strategies for any CDH related physical limitations or learning differences.

6. For returning students, do we need to review an existing IEP or 504 plan for the new school year? What does that process look like? Do our external therapists and medical team need to be involved? Who will be involved with this review within the school? What documentation do I need to provide for a review?

7. Because the common cold can cause the need for hospitalization in a child born with CDH and RSV/flu are potentially life threatening for our child, we will always act conservatively with exposure risk. Please communicate your attendance policy with us and let us know what documentation you need for absences. If we have a hospitalization, what will be the make up work expectation? If we have to be out for an extended period, what will the procedure be? What would trigger truancy court or child welfare becoming involved?

8. If it is allowed, legally, please notify us if any child in our classroom has a contagious medical situation such as strep throat, influenza or a stomach virus. We do not want to know the name of the sick child or any details, but it would help us make sure we make appropriate decisions regarding how a contagious illness may impact our child.
   

We recommend that all parents consider the following for their children born with CDH when making school decisions for the upcoming year:

1. What is the procedure for when a teacher or child tests positive in the district? School? Classroom?Will families be notified if a classmate, teacher or relative of a classmate tests positive? How will this be communicated?

2. If my family chooses virtual instruction or if in-person school moves to a virtual situation, how will my child's IEP or 504 plan be honored?

3. If we choose in-person or virtual, can we change our minds? If so, what are the parameters?

4. Will local teachers instruct my child or will the instructors be from elsewhere.

5. What equipment and technology will my child need? Can this be ordered through the school system at a lower price than retail?

6. If we choose virtual school, how will we obtain text books?

We also recommend asking your CPA or financial planner if there are any creative ways to pay for tutors or enrichment programs like Kumon or Mathnasium. The CDH Foundation was advised by one local CPA, it was his opinion that a pretax account such as a dependent care account could be used for an enrichment program like Kumon or Mathnasium if both parents are employed because in his opinion that is childcare with the added benefit of learning. To visit our dedicated page to COVID 19 and returning to school, please click here.