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

Being in a hospital room loaded down with so many machines that it becomes nearly impossible to find the baby is a parent’s worst nightmare. Hospital equipment can be daunting, but knowing what each piece does helps make a stressful situation a more understanding situation.

If your delivery day is approaching for your CDH baby, you are probably wondering what to pack. For the most part, the hospital will likely provide everything you need. However, it is always nice to have some of your own personal items as well. As you begin to create your list, here are some items we’ve found helpful.

The Ronald McDonald House is a wonderful charity that allows families to relocate near the hospital in times of need at little or no cost. You will find that the RMH is similar to a hotel and will already provide much of all you need. However, parents have found that bringing a few extra things allows for a more comfortable stay. Here are popular items of your own to bring!

While it might not come as naturally in a hospital setting, it is definitely possible to have a beautiful relationship with your CDH baby while they are in the NICU.

We knew we would be looking at an extended NICU stay with our CDH baby. What we didn’t know is that we would spend 323 days in a hospital 623 miles away from our home. While this time was unexpected and quite possibly the hardest thing we’ve been through, we found ways each day to make the best of a tough situation.

One of the hardest parts of staying at a hospital long-term can be having to spend the holidays away from our loved ones. Even though you may not be able to recreate every tradition or the heart-warming feeling of being at home, there are many things that you can do to bring joy to your family and make the most of the hard days in the hospital! 

Once you are given a CDH diagnosis, several things generally come to mind, one of which may be, “How Will I afford a CDH baby?” The idea of medical bills, time off work, and expenses related to relocating may make everything seem impossible. However, there are several things you can do to begin saving and help offset the cost.

I know the thought of going through the CDH journey, miles away from family, is very overwhelming. It is important to remember that ultimately this sacrifice gives your CDH baby a greater chance of coming home faster and in much better health, which could ultimately save money and allow your family to find a new normal, at home, more quickly.

If you aren’t given hope, if the doctors do not believe in your babies ability to survive, get a second or third opinion. Seek out a quality CDH surgeon at a hospital that has a top-notch CDH program. Find someone that believes in your baby’s ability to survive and thrive. Find someone that will fight for them every step of the way and has the skills to redefine impossible.

We are honored to have you be a part of this journey to infuse the CDH world with the optimism, understanding, and support that this community needs. We invite you to come along with us because together we are stronger!

I would never wish a CDH journey on anyone, but I'm so grateful for who our family has become because of it.

Our hearts go out to all CDH families everywhere- we are all victims and survivors in one way or another, and the heavens are filled with too many CDH babies who left this life too quickly. We know God’s hand is in the details of our lives, and praise Him for guiding our every step in this journey.