Finding a Pediatrician for your CDH Baby
Once your CDH baby is finally ready to go home, you will have a big decision to make before leaving the hospital. That decision is: Who will continue providing their medical care locally? Who will be their pediatrician? Here are some tips to help you make that important decision.
Social Media
Before your baby is born, go on Facebook, and ask for pediatrician recommendations. You can even join a local mothers group and ask for a pediatrician's recommendations that have handled medically complex children. You will quickly find that a few names repeatedly pop up, and it will give you a great place to start!
Interview
Once you have a few doctors in mind, ask to meet with them to discuss your Tiny Hero’s care plan. Ask how familiar they are with CDH, if they will work hand in hand with your baby’s surgeon, if they give an after-hours number (or better yet-their cell phone), if they guarantee to see you the same day for sick appointments, and if they have admitting privileges to the local children’s hospital. Remember that you may end up being the CDH expert in the room, and that is okay, as long as they are willing to learn and willing to reach out to colleagues or your baby’s surgeon as needed. If you feel they won’t, they may not be the right choice for your family, even if they are amazing.
The Facility
During your interview, make sure you are happy with the facility. It should be clean, friendly, and they should understand the severity of the illness. You want to make sure they will bend over backwards to accommodate your family’s unique situation. Ideally, you will also want to make sure that the office has a “sick side” and a “well side” separated by walls to cut down on germ exposure. However, even if it does, it’s a good idea to ask if they will allow you to call when you arrive and wait in the car until it is your turn to go back or if they would let your child to be immediately called back upon arrival to avoid the waiting room altogether. It’s amazing how willing some pediatricians are to work with families with a CDH baby!
Your First Visit
Before your first visit, they should have received your medical records, but those files are large, and they may not thoroughly read everything before that first visit. It is important to type up a document that you can bring with you to the appointment. You can use our template here to assist in this process. It will help you highlight all of the important information, current/prior medications, surgeries, surgeons’ contact information, and other things they may need to know in one easy-to-read sheet of paper.
Stay Healthy During the Visits
Once you arrive at the doctor’s office and have your plan for where your CDH baby will wait (the car, well room, or called right back), ensure they stay as germ-free as possible by keeping them in their car seat carrier with a cover or baby-wearing with a blanket over your shoulder (make sure there’s plenty of room for them to breathe). Use hand sanitizer a lot and make sure anyone touching your child wears gloves or washes their hands in front of you. You can also ask to see them wipe down the exam table, scale, and anything else your baby may need to touch.
Siblings at the Doctor
If older siblings are coming along, be sure to use a stroller (maybe up to age 5 or 6) to give them a germ-free place to sit, and bring a few books or toys. Doing so will help cut down on kids rolling around the floor, playing with the doctor’s office toys, licking walls, and even just sitting in the germy chairs. If they are older, use a wipe to clean their chair and discuss how important it is to keep their hands off things and disinfect. Once you get home, be sure to have everyone take off shoes before they walk around and change everyone into fresh clothes before they sit on the furniture.
Having a baby with CDH changes the way you function in certain environments. However, the better protected your baby’s lungs are early on, the more typical they will be in the future. Going the extra mile to find the best pediatrician you can and keeping your CDH baby healthy during the visits will pay off tenfold in the long run!
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