Hi my name is Hope and my fiancés name is Joe. We live in Fort Wayne Indiana. We have a little boy, Trevor with Cystic Hygroma (ch). When Joe and I got pregnant with Trevor I was considered high risk, due to our previsely pregnancy. In 1997 we had a stillborn baby boy his name was Dylan. The cause was by his umbilical cord; it was in a knot and around his neck. So when Trevor was conceived we went to a great high- risk specialist. Cystic Hygroma develops 6 weeks gestational, we’ll I was 7 months when he found it on Trevor. Talk about devastated! Our doctor refereed us to Riley Children Hospital in Indy. We would deliver Trevor down there because they were very concerned about his airway. We were scheduled for a c-section on November 28, 2000. The night before we went down because we had to be there at 7 am and we live about 2 to 3 hours away. That night was awful, I could not sleep all I thought about is what’s going to take place tomorrow. Before I knew they were taking me to get me prepped for surgery. They insisted that I was put to sleep, I guess because they weren’t for sure of the outcome. They would not allow Joe to stay in the room either. As I laid there on that operating table, (just like yesterday), tears streaming down the sides of my face, all I could think of was “ please Lord don’t take this baby from me to”. I prayed to the good Lord, as I prayed I explained to him that I would not be able to handle that again. I asked him that if he had to take this precious baby from me, then please Lord take me along. Soon after that I woke up. I seen Joes face and the expresions on his face told he was here. I turned to my side and there was this little baby boy. It was the happiest day of my life! We were only allowed a minute with him, but I was so happy I knew as long as he was here with us we could handle anything.

We were at Riley Children’s Hospital all together for about 2 months. We were discharged after Trevor was one month old, but things did not go right and we ended up back their. The next time we were discharged about one month after that we went home and everything seemed to fall into place. We have had some real difficult times, but we have made it through them. Throughout Trevor first year of life we had therapies, PT, OT and then speech. Since birth Trevor has been trough one major debulking surgery, 5 alcohol injections and 3 Radio frequency ablations done to his tongue.  As of today Trevor is a very handsome little boy, he is very smart and very well behaved, well the last couple of weeks I think he is getting into his terrible two’s! He is very smart though at about the age two he was already putting 25 piece puzzles together without the picture background, don’t ask me, I have know idea. Today he can already count to 13 at the age of 33 months. He’s doing pretty well with the alphabet he recognizes them and also colors. It is amazing how they learn and how fast! Trevor wears a passé meir valve (PMV) throughout the whole day, his speech is excellent with consideration that his tongue is large due to the CH. If there is anything I can help anyone with I am willing to give it a shot. We have been through many of wonderful experiences, from, medical issues with the trach, plugging, suctioning, coming out, etc. Insurances (medicade, medicade waivers) therapies, eating, PMV, g-button just about everything. Please don’t hesitate to email me I will try to help in anyway possible.  God Bless, Hope, Joe, & Trevor