Third & Final Diagnosis

On March 26th we had our third visit with the perinatologists at St. Luke's on The Plaza. We met with Dr. G again. Since it had been about 6 weeks from our last visit, Dr. G was able to see a lot more and have a pretty good idea of what was going on with our baby. It was pretty clear from this ultrasound that Kinley has a Congenital Diaphragmatic Hernia (CDH). Unfortunately for us and Kinley, out of the three diagnoses this is most severe and problematic. This means that Kinley's diaphragm did not close all the way on her left side and her stomach and intestines have slipped up into her chest cavity, filling up the left portion. This is the reason that her heart has shifted to the right side of her chest. What this means for Kinley is that she will have a whole new set of obstacles to overcome. Our main concern will still be the amount of lung tissue she can build before birth and how it will function at birth. (Some CDH babies are unable to produce enough lung tissue to sustain life, even with the help of a ventilator.) She will also need surgery, soon after she is born, to bring her stomach and intestines back into her abdomen and repair the hole in her diaphragm. This will give her lungs room to expand. As soon as she is born, she will be intubated and put on a ventilator. They will also place a NG tube that goes in her nose and down to her stomach. This will be used to make sure that her stomach does not fill up with air. Since her stomach is up in her chest, we want to make sure that it does not begin to expand and put more pressure on her heart and little lungs. Once she is stable (blood gases are good and doing well on the ventilator) she will be transferred to Children's Mercy Hospital. This could be between an hour after birth to a few days. Once she is at Children's Mercy Hospital, they will continue to monitor her stats and wait until she is stable enough for surgery. When the surgeons feel she is ready, she will undergo surgery to bring her intestines and stomach down and then patch the hole in her diaphragm. After surgery we will be able to get our best idea of how much lung tissue Kinley will have to work with.