11 Things You Should Consider About Relocating for CDH Care

When you first hear the words “Your baby has Congenital Diaphragmatic Hernia (CDH),” your heart drops, and your world stops. It leaves you with a lot of questions, a lot of decisions to make, and very few answers. 

One of the most critical decisions you’ll have is deciding where to deliver. 

Often there is a great children’s hospital nearby, which will seem like an easy and natural decision. However, it is important to remember that just because a hospital is great doesn’t mean they will be great with CDH. Before deciding on this option, it is important to interview the hospital and determine how often they see CDH, their survival rate (overall and for your child), and what life looks like for the kids that survive. You can find a list of questions to ask your doctor here.

A lot of factors go into the choice of relocating, but here are a few things you may want to consider as you make that decision.

11 Things You Should Consider Before Relocating for Care

  1. Why do people travel for care?

  2. Will my baby’s survival really be any different if we relocate?

  3. Wouldn’t a better hospital cost a lot more?

  4. Where will I live?

  5. What about my older kid’s school?

  6. What about my other kids?

  7. What about our jobs?

  8. But what if my insurance won’t cover an out of state hospital?

  9. What if the hospital I want isn’t in the network?

  10. What will I do with my pets?

  11. I’m not sure I can handle being away from family!

Why do people travel for care?

Mother at CDH unit

Often, families will not live near a high-quality CDH hospital, and as a result, they will opt to travel for care. This allows them to seek out the best care for their child, wherever it might be, and will generally offer better odds of survival than the local hospital. Traveling often sounds impossible, especially if you already have other kids. However, many hospitals have things in place that make the process much easier!

Will my baby’s survival really be any different if we relocate?

There is always hope for your baby, even if your child has a heart defect or other genetic abnormalities. If you’re given a low chance of survival at your local hospital, it is even more important to look for a hospital with experience treating CDH and other abnormalities. The top CDH hospitals see upwards of 50 cases a year and maintain excellent survival rates. If you are not given hope at home or are given a low chance of survival, reaching out for a second opinion is something for your family to consider.

Wouldn’t a better hospital cost a lot more?

 No, surprisingly, not. As long as your insurance provides coverage for the hospital you are considering, the cost per day will be roughly the same. However, because better-qualified hospitals often get babies home more quickly, you’ll often find that it is less expensive to seek treatment in a hospital that specializes in CDH, with top of the line staff and equipment, than it is to go somewhere that sees CDH less often. Also, a CDH hospital will likely send your baby home with healthier lungs and a brain that has been well protected, which will mean they are better able to handle illnesses, need less medical care in the future, and are often on things such as oxygen or G-Tubes for less time. Having an overall healthier baby will save money and time off of work in the long run.

Where will I live?

Ronald McDonald House

When you relocate for care you have a couple of options. Many hospitals have a Ronald McDonald House. This is a house run by a charity that allows families to stay close to the hospital while their baby is being cared for. They offer free meals as well. And only request a donation of $10-20 a night depending on where you go. Usually, you can begin living there once the baby is born, but depending upon which hospital you choose, you might be able to stay there before as well (such as Johns Hopkins All Children’s in St. Petersburg, Florida). If this is the case, that is a significant cost saving since generally, they like families to move close to the hospital late in the third trimester. Another option is renting an apartment or Airbnb, which is often more expensive but allows more space and a little added privacy.

What about my older kid’s school?

If your children are in school, and you want them to relocate, talk with their school, and make a plan for how schooling can continue remotely. Often the teacher can give and receive assignments remotely. There is also a tutor at the Ronald McDonald house that may even be willing to communicate with the teacher and provide lessons during the stay. Another option is to temporarily enroll the children in a school near the hospital.

What about my other kids?

You will need to ask your specific hospital what accommodations they have, but some hospitals will have a kid’s room for kids over 5 and a child life specialist to bring activities for younger kids. Ronald McDonald House also provides amenities for kids, which may vary from house to house, but could include a school with a tutor on staff to help with school work, a playground, and an inside play area. They also typically provide passes to local attractions, museums, and sporting events. Many people also have a grandparent, aunt, or close friend come as well to provide care while the parents are in the hospital. Sometimes families even opt to leave their older kids home with relatives so that they can continue school and maintain as much of a normal routine as possible.

But what if my insurance won’t cover an out of state hospital?

If your insurance will not cover care out of state, and you feel like traveling for care is necessary, you can opt to buy into private insurance temporarily. Paying for private insurance for a few months will allow you to relocate and seek care in whichever hospital you feel is best. As stated above, it may be more expensive in the short term, but a shorter hospital stay and coming home with a healthier baby is likely to save money in the long term.

What if the hospital I want isn’t in-network?

If the hospital you would like to use isn’t in-network, you can contact your insurance provider and request a waiver to seek specialized care. The surgeon or program coordinator will often write a letter that explains why traveling out of network is necessary, which can help you plead your case. They may even do all of this leg work for you to make it happen!

Mother working from the hospital

What about our jobs?

The hardest part about relocating is the financial aspect of taking leave from work. Often a talk with your boss is all it takes for them to understand the importance of time off; however, that’s not always the case. This will vary largely depending upon where you work and what your management allows. Some people have been able to work remotely from the hospital. Other families choose for the dad to come down for the birth and stay for repair, but then head home once the baby is stable to continue working while mom stays with the baby. Some dads have even found a job once they relocate and continue to work locally. There are many factors to consider, but where there is a will, there is a way!

What will I do with my pets?

Many people wonder what they can do with their pets for the time they are away. There are a few options. The most common is to have a family member or friend agree to look after them for you. Often, during times of crisis, those closest to you are looking for ways to help and eager to step up and assist in caring for your pet(s). If you can’t find someone to look after them and your chosen housing option doesn’t allow a pet, you can also talk with a boarding place, explain the situation, and see if they will offer a discount.

CDH family at the hospital

I’m not sure I can handle being away from family!

It is hard going through something like this without your family’s support, but often the top CDH hospitals will have 10-15 other CDH families at the same time. You will likely get to know these families and bond over the CDH experience. These families will understand your struggles firsthand and be there for you on the hard days and celebrate with you on the good days. If you choose to stay at a Ronald McDonald House, you and the other families will live under the same roof, see each other at meals, and around the hospital. You will likely not feel alone when you are surrounded by so much support!

Relocating for care isn’t easy, but it is possible. If you feel like it is the right thing for your family, we definitely encourage you to get a second opinion. You’ll never regret checking out other hospitals, but you may regret it if you don’t. Once you interview the other hospitals, you can decide which is best for your family. That decision may include relocating, or it may involve staying local, but at least you will be able to make your decision knowing your options and having talked to other places.

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