Miracles for our Mason Baby

During our 19th week ultra sound we found out we were blessed with a little boy! We knew it!! We gave him the name Mason Donovan. We left so happy being told nothing more other than to come back a week later to meet with the doctor again. I thought nothing of me coming back so soon. So, a week later we got the news that I needed to go see a specialists because they ‘think’ our babies stomach herniated up into his chest pushing other things to where they should not be. It was not a definite diagnosis on that day but it was the worst news I have ever received and the feeling that ran through my body was complete heartache, helplessness, and emptiness. All we could do was wait until we got a confirmed diagnoses. Just a few short days later we had my appointment to see a few specialists in Lehigh Valley. We had all kinds of paperwork followed by a lengthy ultra sound and then a consultation with a Genetic Counselor to explain our babies’ condition and also some defects that may consequently follow. I really at this point could not contain my tears because it was finally confirmed that our baby has a Left Congenital Diaphragmatic Hernia, also referred to as CDH or LCDH. This happens due to around 10 weeks into the pregnancy rather than the diaphragm moving closer and closer together until it is fully developed and connected right across, it just stops leaving a hole varying in size. In a fully developed baby and person the diaphragm would be what separates the heart and lungs on the top half of your body from the organs such as your Liver, Intestines, bowel, etc. on your bottom half. So even though at this point we had a definite diagnosis in terms of the severity and we still needed to figure out if there may be other problems following. I was given three choices in such a short amount of time. One: keep the baby and continue with testing. 2. A Medical Termination 3.Allow them to perform an amniocentesis (This is where they use a needle to extract the amniotic fluid right from my stomach to test the fluid surrounding the baby for possible genetic defects). I truly didn't even know what to think but with support from my boyfriend, Kyle, i made the decision to have them perform the amniocentesis that same day to tell us if the baby would have genetic disorders following the CDH such as Down syndrome, trisomy 13 (which would mean definite death soon after birth), etc. I would be lying to you if I said that we left this appointment with any sense of happiness or hope or sense of right and wrong. We truly felt crushed and the ride home felt so empty and lost. We don't know what our future holds but we do know that we already have so much love and so many hopes for this child that we created. Our worlds just crashed. Only a few short days later we had our first appointment to meet with the specialists at the Special Delivery Unit at the Child Hospital of Philadelphia (CHOP). This appointment would give us the definite 100% diagnoses and severity to what we were dealing with. My boyfriend and I felt more comfortable going to this appointment because we knew we would finally know everything that we needed to. It was a long day but it was well worth it and an experience I am blessed to of had no matter what the circumstance. Our final diagnoses was this: The baby has a Left Congenital Diaphragmatic Hernia (LCDH), the hole in his diaphragm is a pretty large one that will need to be patched up ASAP after birth, due to his stomach pushing up into his chest his heart is being pushed over to the right side of his chest which is crushing the lungs not allowing them to grow to full potential allowing the high chance he will have a lot of trouble breathing on his own, some of his intestines moved up, and the biggest problem that we were hoping not to hear was that the top of his Liver had moved up. There is a substantial difference in the survival of CDH babies who have Liver up or Liver down. Babies with Liver down have a much higher survival rate. Having the Liver up causes more problems because even though other organs have moved up they are squishy allowing for more growth whereas the Liver is like placing a brick in his chest. We received good news and that was that our Genetic testing came back clear which means the baby has NO defect as I mentioned before such as Down Syndrome, Trisomy 13 (again meaning death shortly within birth), etc. That was wonderful news on top of not so great news. We also were told that his heart looks fine, his heart rate was perfect, his brain has no problems, he has ten perfect toes and fingers, a cute little nose, his daddies ears, and that he is growing perfectly normal and is almost a whole pound! He’s also very active! Our baby was given a 65-70% chance of survival and he is being considered a moderate/severe case. This means that he is NOT in the 10% of CDH babies who cannot be brought to life but he is also NOT part of the 10% that have really hopeful situations and chances. He is at the lower end of the 80% of cases they typically see, however he has closer to the severe end more so than the better end. I am assumed to carry out as long as the baby lets me and by 39 weeks if the baby did not come they will induce my labor and it will be as natural as possible as long as the baby does not show signs of distress. The moment he is delivered the doctors need to take him away immediately before he can even manage to have his first cry. They need to replace his own breathing with a tube through his mouth/throat and through his nose that will go into his belly to get the fluid out. He will most likely be put on a machine called ECMO (ExtraCorporeal Membrane Ocygenation) which will pretty much be doing all his breathing and heart work for him. He will be sedated and these machines will be taking his blood out and putting it back into his body through two veins in his neck. The hope with this is that he stabilizes and when he shows signs of strength they will perform a surgery to place his organs back to where they belong and to patch up he hole in is diaphragm. The risk with ECMO is that it stops the bodies natural blood clotting and the fear it can in some cases cause bleeding to the brain resulting in neurological issues ranging from a simple learning disability that they can help to a much more severe medical problem. We have no say on when we will get to finally hold him, dress him, or bring him home. The doctors told us we have a long journey ahead of us but they hope that Mason is a little fighter! I have off and on days with keeping faith but it’s just because I am so scared. In my heart I believe we will be able to sit with our son and tell him the crazy way he entered this world and that he beat the odds! Something i want people to understand is that CDH is not a from of Mental Retardation or anything in that general category. I had a few people misunderstand that after the surgery and time in the Neonatal Intensive Care Unit our son can fully recover if that is God's will and that he may one day be a perfectly healthy little boy running around, breathing and eating on his own. It is a very scary thing and I often question why we have to go through this but I think I have to accept that we may never know the reason. I truly with all my heart hope that we have a little warrior on our hands and we get too bring him home safe and sound one day. When I chose Mason’s middle name I was not sure of the exact meaning. Two days later after the official diagnoses I happened to look up what the name ‘Donovan” means and it means “Little fighter.” I hope that’s a sign. With all my heart, I hope he’s our little fighter. Please keep our son in your prayers and know that any help is appreciated toward this. We thank you in advanced.
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Organizer

Kasey Lynn 
Organizer
Hazleton, PA
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