Questions To Ask When Expecting a CDH Baby
By Ladybug Founder/President Liz Dooley
First YOU can "interview" your doctors - do not be intimidated by the doctors. They are human – it is important you develop a relationship with your doctors and the staff that will take care of you and your child. You do have a choice where you deliver, and can push to deliver at a hospital with more experience with CDH.
Here are some key questions to ask when choosing a hospital
How many CDH babies does the hospital have per year average? (On average, hospitals treating 10 or more per year have a higher survival rate).
What is their survival/success rate?
Do they practice gentle ventilation?
Do they have ECMO (Extracorporeal Membrane Oxygenation) and a team/program and how long have they utilized it for their hospital/Medical Center?
How many ECMO Machines do they have and how many patients can they treat on ECMO at one time?
Are they capable of performing FETO ( (Fetoscopic Endoluminal Tracheal Occlusion)?
How long have they been taking/treating CDH cases in the NICU?
Can you meet/interview the neonatologists, surgeons, and tour the NICU?
What are the Rules/Policies of the NICU or Hospital you should be aware of?
Can I stay in-room with my baby in the NICU?
What can you expect to happen when the baby is delivered?
Is NICU in the same building or do you transport to another location?
Some other important things to consider
After delivery, how much of an active role do they allow parents to play in their child's care? (A good hospital/doctor will tell you as much as you want to and we get permission from you before each procedure – unless it was urgently needed. There are exceptions – when they are in critical care sometimes touching and sounds can aggravate a baby.)
How many doctors are on their TEAM? Do they use a TEAM approach in their hospital with patients? That is - Nurses, Doctors, Respiratory Therapists all are involved in the care of that child and before a major decision - they consult.
As measurements are continually taken via ultrasound and later MRI, continue to ask what their measurements are indicating for lung volume in both the affected and less impacted lung. How does this compare to the lung volume a fetus at the same gestational development?
Do these measurements indicate the need for ECMO support?
Does my baby need in utero surgery, FETO?
Do you have surgeons proficient in performing the FETO? Where did they train? How many have they performed?
Is FETO still considered experimental?
Do they consult with other hospitals on their patient's care?
Do they perform laparoscopic/thoracoscopic surgery for the repair if they can? Why or why not?
If there is not enough diaphragm tissue during repair to close naturally- how will they close the hole?
When do they start Physical Therapy on these babies? (The sooner they start the more likely residuals are resolved or abetted.)
How will they be tracking the progress of your baby?
Will they allow you to attempt breastfeeding if you desire once baby is allowed oral feeding?
Are meals provided for nursing moms by hospital while in NICU?
Make sure you feel your questions are answered!! Do not feel you are annoying or like you are irritating them. This is your baby.
Also, check with your hospital social worker for what resources they have available. There are hundreds of programs that help with food, parking and other expenses that you will have. It adds up quickly. Ladybug CDH Foundation will also help with gift cards for gas and meals.
