Real Hope for CDH

      Affectionately known as "KAYS' KIDS"

  Learn about a 92% survival rate for CDH babies born here at Shands

  Learn about a 92% survival rate for CDH babies born here at Shands

Dr. Kays' Team Has a 92% Survival Rate for CDH babies born at Shands

CDH baby under the watchful eye of Dr. David Kays

Travel Questions

Q. – Where is the best place to fly into?
A. –  Both Jacksonville and Tampa’s international airports are about 90 minutes from Gainesville.  Jacksonville is North and Tampa is South.   There is also a regional airport in Gainesville which is increasing its flights to and from other major US cities.  Check out the link to the Gainesville Chamber of Commerce for more flight info as well as info on rental cars etc...

Q. -  Where can we stay while in Gainesville?
A. -  There are many national chain hotels in Gainesville.  Check out Gainesville Chamber of Commerce  for direct links to these properties.  Be sure to tell the hotel staff why you will be in town when you make the reservation.  Many of these hotels offer Shands discounts.  Some of them, like Extended Stay America, are appropriate for long term stays because each room has a kitchenette with a full size refrigerator, microwave, utensils, etc.  There is a Ronald McDonald House in Gainesville close to the hospital.  You can stay here once your baby is born for up to 30 nights for $10 a night.  You have a private bedroom and share a common living area, kitchen and bathroom.  After 30 days, you can “re-apply” to stay longer should your baby still be in the NICU.  Check out the link to the Ronald McDonald House (RMH) on this site for more information.  There are also a number of apartment complexes in Gainesville that offer short-term leases from 1-3 months on furnished apartments.  Links to some of these properties can be found on this site through the Gainesville Chamber of Commerce link.

Pre-Delivery Questions

Q. – Can I come for a consultation before delivery?
A. – Absolutely!  Dr. Kays and his team would be happy to meet with you to answer your questions before delivery.  Dr. Kays will probably recommend that you have a level 2 ultrasound done by Dr. Doug Richards, the OB/GYN he works with.  You can also tour both NICUs at Shands.  It is also a good idea to tour the NICU of your local hospital with ECMO capabilities in case you need to deliver at home.

Q. – Who do I call with questions regarding whether my health insurance will cover Shands and Dr. Kays?
A. – You can contact Djennet in Dr. Kays’ office at 352-392-4410 or Anita at 352-392-3718 to inquire about insurance information, e-mail Djennet or Anita.
A. – You can also contact: Craig and Kelley Wheeler at 704-845-3022 NC. They are parents of a CDH Child with helpful information about health insurance. email Craig & Kelley.

Q. – If I am traveling from out-of-state, when will I need to arrive in Gainesville for delivery?
A. – You will most likely be induced at around 38 weeks.  You will probably want to arrive at least a week prior to get settled if possible. 

Q. – Will I need any procedures/medication prior to delivery?
A. – You will probably have at least one non-stress test done in Gainesville prior to delivery.  You will most likely also receive steroid shots one week prior to induction/delivery.  The steroids are given to help mature your baby’s lungs.  Dr. Kays will give you more information on this procedure. 

Q. – Will I be able to have a vaginal delivery?
A. – Under most circumstances, you will be able to attempt a vaginal delivery as long as both you and your baby are tolerating labor well.  You can discuss the possibility of delivering by cesarean section with Dr. Kays.    

Post-Delivery Questions

Q. – Will I hear my baby cry in the delivery room?
A. – If your baby has a mild to moderate CDH, you may hear some soft cries upon delivery.  Babies born with more severe CDH will probably not be able to cry initially.

Q. – When will I be able to hold my baby?
A. – You will most likely not be able to hold your baby immediately after delivery.  Dr. Kays will bring your baby to you for a quick kiss before the baby is taken to the NICU.  You will probably not be able to hold your baby until after he/she has been taken off the ventilator.  Remember that you can be close to your baby and will probably be able to touch him/her on the hands, feet, etc. while you are waiting for that all important first cuddle.  The doctors and nurses will let you know how much stimulation your baby can tolerate and when. 

Q. – When will the surgery to repair my baby’s CDH be done?
A. – Depending on a number of issues, your baby’s CDH will likely be repaired within the first several days of his/her life.  Dr. Kays will provide you with specific details on this once your baby has been assessed after delivery. 

Q. – What is a ventilator and will my baby need it?
A. – A ventilator is a machine that helps your baby breathe.  A doctor inserts a plastic tube down your baby’s trachea or windpipe that is connected to the ventilator.  Most CDH babies will need to be put on a ventilator immediately after birth.  Dr. Kays and his staff use gentle ventilation techniques because they understand that too much ventilation can be lethal for these babies by further and irreparably damaging already fragile lungs. 

Q. – What is nitric oxide?
A. – Nitric oxide is an inhaled gas that can sometimes aid in lung recovery. 

Q. – What is ECMO and will my baby need it?
A. – ECMO stands for Extracorpeal Membrane Oxygenation.  ECMO is a very large machine that is a form of lung and heart support similar to continuous heart-lung bypass and is used to support between 25-50% of CDH children whose lungs fail in the first few days of life.  ECMO improves CDH survival by allowing lung rest, lung maturation and resolution of pulmonary hypertension.  ECMO is a very important part of treatment for patients who fail other therapies.  Click here for a picture of a newborn on ECMO.  The canulas that you see going into the baby’s neck actually go into his heart.  The ECMO machine takes the blood out of his heart, filters and oxygenates it, and re-circulates it back into his heart.  Dr. Kays and his staff will provide you with more information on ECMO should your baby need it.  It is critical that you deliver at a hospital with ECMO capabilities should your baby need it to survive.

Q. – Will I be able to breast-feed my baby?
A. – You will not be able to actually nurse your newborn at first.  but you may and will be encouraged to begin pumping your breast milk shortly after delivery.  The nurses in Labor and Delivery are angels and will help you to get started.  They will provide you with all the information and equipment you will need.  Once your baby is in the step-down NICU, you may be able to attempt actual nursing once given the okay by the doctors.  Some CDH babies turn out to be great nursers and others are never able to nurse but do fine with a bottle. 

Q. – What is the difference between NICU 3 and NICU 2?
A. – NICU 3 is the critical care NICU where your baby will be placed immediately after delivery.  Almost all CDH babies will be on a ventilator for some period of time and some will need ECMO as well in NICU 3.  Once your baby has been weaned off the vent and ECMO, if needed, and is breathing on his/her own with the help of only oxygen through a nasal canula, he/she will likely be moved to the “step-down” NICU 2.  NICU 2 will be your baby’s home until he/she is ready to be discharged.  Feeding issues are evaluated and managed here.  Your baby’s weight gain will be closely monitored. 

Q. – When can I visit my baby in the NICU?
A. – Generally speaking, you can visit your baby any time in either NICU.  There are certain blocks of time each day (10 a.m. – 12 noon, for example) when doctors do rounds and visitation is not permitted.  The NICU staff will provide you with more specific information.  Only 2 people per baby are permitted to visit at the same time.  Visiting family and friends must be accompanied by the baby’s parent or grandparent. 

Q. – Will I be able to care for my baby in the NICU?
A. – While in NICU 3, your baby will be cared for primarily by his/her doctors and nurses.  They will let you know what you can do to help.  Do not be surprised if your baby is not able to be bathed for a few days after delivery.  Some babies are just too ill to bathe until they are more stable.  Of course you will be able to provide some of the most important care for your baby during this time…by being present and talking, singing, etc. to your newborn.  Remember that your baby knows your voice, not the voices of his/her doctors and nurses, so your presence and voice is crucial to helping your baby get well.  Many parents have taped themselves reading stories and singing to their babies and then purchased a small audiotape player to be kept at the baby’s bedside.  The tapes can be played by your baby’s nurses in your absence to help soothe and calm your baby.  Once your baby is in NICU 2, you will be able to take a much more active role in his/her care.  You will be able to bathe, change, dress, feed, rock, etc. your baby in NICU 2.

Q. – Who communicates with me about my baby’s condition?
A. – Dr. Kays and the entire NICU staff are very good about keeping you informed about how your baby is doing.  Don’t be afraid to ask questions!  It is helpful to write down your questions/concerns daily in a small notebook you carry with you to and from the hospital.  If Dr. Kays is not personally available when you are visiting, other doctors in the NICU and your baby’s nurse will be able to answer your questions. 

Q. – Who can I talk to about how I am coping with my baby’s condition?
A. – There is a NICU social worker on staff who is available for you any time you need to talk.  Please remember too that we formed this parental support group to help you in any way we can.  Don’t hesitate to contact any of us when you need to cry, vent, rejoice, talk, etc.!  Our phone numbers and e-mail addresses are located on the “Members” page.

Q. – How long will my baby need to be in the NICU?
A. – Depending on the severity of your baby’s CDH, you can expect a NICU stay of anywhere from 4-12 weeks.  Keep in mind that there have been a few cases where babies have needed to stay up to 20 weeks.

Q. –  Can I bring clothes into the NICU for my baby?
A. – Yes you can bring clothing in for your baby once he or she has been moved to the NICU 2. Personal clothing won't be necessary in NICU 3. Remember that little shirts or onesies that button up the front are the best to accommodate the wires & tubes. Avoid bringing clothes that snap in the back they are simply too difficult to maneuver around all the wires and tubes etc....

Are you a parent carrying a child with CDH? Click here to contact Dr. Kays and his staff