FAQ on the CDH Diagnosis
When we hear the words, “I see a problem with your baby,” everything seems to come crashing down. What is CDH? What will it be like to have a CDH baby? What does this mean for our pregnancies or even the future? It’s natural for so many questions to rush into your head that at that moment you are left confused and don’t know what to ask or even what to say! Below we’ve included some of the most commonly asked questions we get related to CDH pregnancies and the more medical side of having a CDH baby.
What does CDH stand for? CDH stands for Congenital Diaphragmatic Hernia. It is a birth defect that occurs when the diaphragm fails to fully develop and the organs migrate into the chest cavity stunting lung growth.
My doctor recommended an abortion, is that necessary? No! Definitely not!! There is so much hope for CDH. Nationally, the survival rate is around 70%, but there are hospitals with over 90% survival! Seek a second opinion from a top hospital before making this kind of decision!
My baby has CDH. Does that mean I need a c-section? Each hospital will have its own standard protocol on this topic. However, in general, there is no reason to completely rule out a vaginal delivery simply because you have a baby with CDH. In fact, it is commonly believed that vaginal deliveries are ideal when possible. Going through the birth canal helps squeeze excess fluid out of the lungs, and this is said to give the baby a slight advantage early on. It is one less thing the lungs have to overcome in those first few days. Although, if it is decided that a c-section is necessary due to a history of prior c-section or other various medical reasons, it doesn’t mean that your baby will be too sick to fight or be at a major disadvantage!
What is polyhydramnios? Polyhydramnios means you have excess fluid, and it is causing you to measure larger than typical. This is relatively common with CDH and will be monitored carefully. In many cases, it doesn’t make a difference, but in some cases, it causes early delivery. If you have polyhydramnios and plan to relocate for care, your doctors may want you to relocate a little earlier than planned, just in case.
Will I go into preterm labor? CDH, on its own, doesn’t typically cause preterm labor. However, if you have developed polyhydramnios or have a history with early deliveries, it’s definitely possible. You’ll want to make sure to be monitored by your MFM doctor closely, and if you plan to relocate, they usually like for that to happen around 34 weeks “just in case.”
Should I do an amnio? This decision is entirely up to you and your doctors. The amino brings a slight risk of preterm labor, but it can also give doctors information that may help in the treatment process. In many cases, families elect to do an amnio, just for the peace of mind that they are only dealing with CDH (even though ultimately it wouldn’t change their desire to fight). In many other cases, families would just assume not to do it because they don’t feel knowing ahead of time makes a difference. Definitely go with your gut and make the decision that works for you!
What is FETO, and should we do it?
FETO may be an option available for your baby. It stands for Fetoscopic Endoluminal Tracheal Occlusion. It is a surgery done in utero that essentially inserts a balloon into your baby’s trachea to prevent the fluid produced by the lungs from escaping. Research has shown that this can help stimulate the lungs to grow if performed between 27 and 31 weeks. This procedure is still experimental, though, and does come with some risks, including preterm labor, resulting in a baby that is too small to qualify for ECMO. If you choose FETO, you will need to relocate near the hospital as soon as it is performed, in the case early labor does occur so that the balloon can be removed before delivery. If you are interested in FETO, you will need to find out if your baby qualifies since it is usually only offered to the more severe CDH babies that do not have any other abnormalities. There are many severe CDH babies that have had success with FETO, and their families feel that it saved their baby’s life; however, there are also hospitals that have had proven success with severe CDH using less experimental methods (after birth). You will want to weigh your options and do a lot of research before making the decision. It is also a great idea to talk to a doctor at a hospital that does FETO as well as a doctor at a top CDH hospital that opts not to use FETO, and decide which plan of care feels right for your baby.
When will I need to relocate? This question primarily depends on where you are located and the level of comfort you have with your local team. If they give you survival of 85-95%, you may feel confident in the decision to stay. However, if they give lower survival odds, it never hurts to seek a second opinion from a larger CDH hospital.
Can we still get newborn pictures? Newborn pictures are such an adorable way to capture how tiny and cute your baby is! Just because your baby is in the NICU doesn’t mean you can’t do pictures! Some hospitals have photographers that take photos for free, and if not, a photographer can be hired to visit the hospital. Some people also elect to wait until they get home and then do newborn style photos with their slightly older baby. Either way, it’s so fun to look back years later and see how far they’ve come!
Will I be able to breastfeed? If you desire to breastfeed your baby eventually, you will be able to start pumping soon after they are born. This will ensure that your body is prepared when they are ready to begin practicing. Some CDH babies take to nursing without much trouble and go on to nurse into toddler years. Others struggle due to oral aversions and the fact that they couldn’t practice for weeks or maybe even months. If your baby struggles, try not to get discouraged. They will still be able to take the milk you provide and get the nutrients they need while you continue to practice nursing or decide what method is ultimately best for your baby.
Check out FAQ on a CDH Delivery and FAQ on CDH After Birth for answers to more questions you may have.
Email stories@tinyhero.org to learn about how you can write for Tiny Hero.