By Liz Verjano In early August, my husband and I found out we were pregnant, this would be our 1st. child together. We are considered by all who know us, as the Latin Brady Bunch. You see, my husband has 3 kids Julio 17, Jonathann 18, and Little Ricky 20. I have Nikole 9 and Nathon 17, and now we were going to be blessed with a child of our own. We were all so excited when we found out we were having a girl. Nikole was elated, finally she would not be the only girl in the house. Words could not express the joy that Ricky, my husband had, when he found that he would have a little girl which he wanted so badly. Our happy journey came to a complete stop, when on Dec. 28th 2005 at my 1:30 pm doctors appointment we found out that something was not well with our baby girl. The doctor told us that it looked like our daughter had a diaphragmatic hernia, which meant that her diaphragm had not closed properly, and that her stomach had passed upwards towards her heart. Her lungs would most probably have a problem developing. All I could do was cry, and cry, and cry some more. At that time the doctor suggested that I delivery my daughter in Gainesville, Florida (which is about 6 hours away from us by car) since one of the best doctors that operate on this kind of condition was there. He also suggested that we do an amnio test, just to see if we were facing any other problems. (Early in my pregnancy my husband and I had refused an amino due to the risk involved.) But at this time, we wanted to be prepared so that we could do whatever we could to help her. Since her stomach was close to her heart, our doctor also suggested that we see a fetal cardiologist. That same day he sent us to one. Again, more bad news that day, our daughter also had a heart condition. The lower and the side wall in her heart were missing, but the doctor told us that this was something that could be fixed with an operation, and should not be a big problem. Our biggest problem was her hernia, how much I wished that would have been so. On Dec. 30th 2005 we received a call from our doctor. I know when I saw my husband’s face that there was something else wrong. The partial amnio test came back and our daughter had a condition called Trisomy 13, which was considered to be incompatible with life as we know it. The consideration of sending us to Gainesville, Florida to have our daughter operated on for her hernia was no longer suggested by our doctor. He suggested that we should enjoy the little time left of my pregnancy, and that he would do his best to have our daughter born alive so that we could hold her, love her, and just let her go to sleep in my arms. My heart stopped, my knees gave out, and all I could do was scream and cry. Two weeks later the full results came back from the amnio test, and it told us that my daughter had Full Trisomy 13. We had so many questions. The doctor suggested that we go into the Internet to find out information, and to see some pictures of what to expect. That night I went into the Internet, and found this wonderful web site,Living with Trisomy 13, and met a wonderful lady ThereseAnn. I e-mailed her that same night. I also saw some of the pictures of children born with this condition, and I could not believe what I saw. Again that night my heart stopped. All I did was cry to the point that my husband logged me out and told me that I had had enough; “You don’t need to see or read any more, our daughter will be ok you’ll see.” The next day ThereseAnn called me and we talked for about an hour, she told me of her daughter Natalia, and for the 1st time in a two week period I felt that there could be some hope for our daughter. Through this web site I met so many wonderful people that helped me so much, and made the following weeks a bit easier to handle. Since I lived in Miami, Florida, Therese asked me if she could give my number to a lady named Courtney from Naples, Florida who just 5 months earlier had lost her baby girl Gemma, and I said yes. At this time I feel it was the best “yes” that I have ever given to someone. The bond that Courtney and I have shared has been so unbelievable, she has been my shoulder to cry on, and truly someone who knew so well what I was feeling and going thru. Her husband also was so wonderful he spoke to Ricky and was there for him also if he needed to talk. Our friends and family were all behind us, constantly praying to God for a miracle to happen, so many friends whom never went to church, or even prayed to God were praying for our little girl and our family, and Ricky and I got so much closer to God. At that point Ricky and I had made a decision that if our daughter was strong enough to make it we were going to do everything in our power to help her fight for her life no matter what the doctors say. With my friend Courtney’s help I created a birth plan for our daughter. We had also made an appointment to see an infant surgeon to see if he would operate on our daughter. This appointment took place on Feb. 7th 2006 at Memorial Regional Hospital. This doctor agreed that if our daughter did fight for her life, he would do the operation. He also invited us to see the NICU unit at the hospital that same day, so we would see where our daughter would be. Later that afternoon I also had a regular doctor’s appointment. Again, disappointment; my daughter was not moving a lot and the doctor did a test with a buzzer to see if she would move and she did not. He saw that her heart was still beating, but told us that if we wanted to see her alive and spend some time with her, I needed to deliver her now, and not wait till March 14, 2006, which was her due date. Our precious Katherine Elizabeth Verjano was born the very next day by c-section at 10:47 AM, she weighted 5 lbs 5oz, and was 18in long. She was so beautiful. She had the most beautiful curly hair, and God had certainly blessed her. She had no outward malformations, but still did have her diaphragmatic hernia and her heart condition. I only saw her for a brief moment, but it will be a moment I will never forget. My husband did have a bit more time with her since they had asked him to go to the NICU unit to see her. All the wonderful nurses and doctors did everything they could to help my precious Katherine Elizabeth fight for her life. Mary helped us take pictures of Katherine Elizabeth while she was in the NICU unit and really touched our hearts by showing up at Katherine Elizabeth’s funeral. Also,awonderful nurse named Elizabeth baptized her when she saw they she was not going to make it. You see, her little lungs could not handle it and were collapsing. So, once again they called my husband into the NICU unit and asked him what he wanted to do with our precious Katherine Elizabeth. With much sadness, he said, “let her rest.” My precious Katherine Elizabeth Verjano, passed away at 12:30 pm. I was able to hold my beautiful baby girl in my arms for a while, after she left with her angel to be with our Heavenly Father in heaven. That is something I will always remember. I was still in the recovery room; all the nurses were crying along with me. I was moved to a private room so that our family & friends could meet our precious Katherine Elizabeth. We all cried, held her, kissed her, and took many pictures. I had bought her a beautiful light green and pink outfit that the nurses put on her, and Ricky, my family, and I were able to be with my precious Katherine Elizabeth until 6:00 pm. Even up to that time our precious little girl still had a beautiful smile on her face, and was so at peace. The time with my precious Katherine Elizabeth was just but a second, but it is a second that I would live over and over again if I could. In that brief time my Katherine Elizabeth brought so many people together, brought so many people closer to God by praying for her and our family. She has brought so much joy and love, and has done so many wonderful things; more then many of us have done in our life time. Please contact me if you have gone through or are going through a similar situation and you need someone to talk too. My e-mail address is firstname.lastname@example.org. Back to Trisomy 13 You can read more about Trisomy 13 and receive incredible on-line support through the private message board on www.livingwithtrisomy13.org.