Angel Cobyn's Story

It all started Christmas Eve when we found out we were going to have a new life come into our family. What a joyous feeling. Our first grandchild. My son (T.J.) was beaming. A couple of weeks later we had the ultrasound results. It’s a boy. We had big plans. We are a sports family. He was going to do it all. I could not wait to tell him Nani loves you. Sing Jesus loves me to him. His mom (Stephanie) and dad had big plans for him. They talked to him sang to him. But something the ultrasound tech. said in passing was "boy he sure has a big head." Oh well, we said. My son and his brothers have big heads and so does his mom’s dad. That is normal for us. Next check up was good. Baby boy’s heart beat good, he is moving a lot. Pregnancy seems O.K. Awesome! Beginning of Feb. Stephanie went for a doctors appt. I was at work and afterwards went to visit my mom. She wanted to talk to T.J. and so I called him on the cell phone. He would not say anything. That was not like him not to do that with his grandmother. I got on the phone and asked him what was wrong. He said he just didn’t have anything to say. I thought the kids were spatting. I called my husband and had him see what was wrong. He called me and told me they needed to talk to me. My heart sank. "No" I said, "Tell me now." He told me there is something wrong with the baby. He has fluid. Okay I thought. I cried but being a nurse started going through all the steps. He can be shunted I thought. Okay no football for him. We can live with that. I got home. My son was crying. Stephanie was with her mom and dad. We talked to our son. Stephanie came back over and some family came over to pray. We can deal with this. A week later we all went for the ultrasound. The doctor was being very evasive. He kept saying he did not want to speculate. We kept asking question and all he would say is that he did not want to speculate. Something he said in a very low voice is that there were only two vessels in the umbilical cord. In the umbilical cord there is supposed to be one artery, one vein and three vessels. When he was scanning I saw the head and something was not right. The brain looked small. I did not want to say anything in front of T.J. and Stephanie. I did not want them to worry anymore than they were already. I came home and got on the Internet and started searching. Oh my goodness. All the things this could mean. Then we found out that spina bifida has been on Stephanie’s side of the family. Dear Jesus! They were going to take Cobyn (they had chosen his name by now) at the end of Feb. Anxiety is not even the word to describe what we felt. Feb. 12th I was sitting watching TV T.J. was at work (he worked nights) and all was well. The phone rang about 11:00 p.m. It was Stephanie’s number. I knew something was wrong. It was her mother. She told me that Stephanie had started leaking fluid and they were going to do an emergency c-section. Cobyn was born at 12:47 Feb. 13. The nurse brought him out all covered with blankets. She said take one look. I was so afraid to look. We all stood there for a few seconds. I pulled the blanket back and saw the most perfect, beautiful baby boy. All fingers and toes. No spina bifida. He was perfect. I just kept saying thank you Jesus. Over and over. He went to the neonatal ICU. We went into see him and they said he has just a mild case of hydrocephalus. Nothing major. What a relief. We came home about 4 a.m. and got some sleep. T.J. called us a few hours later and said the were airlifting Cobyn to Valley Children’s Hospital. Okay let’s go now. They are just going to do the surgery there. That is what we wanted. Great!. My husband, T.J., our other two adult sons and myself were on our way. We were so happy to see him. Everything was perfect! Just a little bigger head that usual. We arrived the next morning Feb. 15th and the CT scan was going to be done. We met with a social worker which is something that they do with all families with children in the NICU. We were going to have to wait to see Cobyn when the scan was finished. We waited. Then they told us they were doing an eye exam. That sounded strange to me. I wondered why? I did not say anything because I did not want to alarm T.J. Stephanie and her family were back home due to the fact she was still in the hospital. T.J. and Stephanie communicated every little bit via phone. We got a call from a different social worker that she wanted to meet with us. We were out getting some air so we ran back up there. My husband and middle son went to get the camera we had forgot and my youngest son was waiting in the lobby. She came out and introduced herself then asked if there was anymore family. This was another uneasy feeling I had. We told her no that the baby’s mother and family were back in Bakersfield and the rest of our family was just a few minutes away. She told us that the neonatal neurosurgeon want to meet with us. I called my husband and son and told them to come back right away. We were all in the waiting room and my middle son asked me what I thought. I told him I thought they might tell us that Cobyn was blind. That is okay we can deal with that. We were taken to a conference room. We prayed while we were waiting. In came a parade of people. I knew this was not to explain the surgery to us. The doctor started off by telling us he was one of the most beautiful baby’s she had ever seen. In my nursing experience I know how doctors start off telling families something positive before they drop the bomb. Then came the bomb. It blew us all away. I can’t even tell you everything she said. She said something like Cobyn was born with only a brain stem and not the complete brain. She used the analogy of a tree that has just the trunk and no branches. What? He would never grow, feel, see, hear, know his family. What? Take him home on palliative care and let him die peacefully. What? I know this is horrible for you all and here is my card. Call me anytime day or night. What? Would you like to see the CT scans? My son said he would. She asked if we had any questions. Any questions? How are we supposed to process this. You have just ripped out our hearts and you want to know if we have any questions? The nurse and social worker tried to comfort us but they needed to scrape all of us off the floor. My son was devastated. People were calling to find out how Cobyn was doing. How do we explain this? Oh my God help us tell Stephanie! How do you tell a new mother that is not even with her son that she needs to come and take him home to die. Dear Lord we cannot deal with this! This is over the top. The call were made Cobyn’s mom Stephanie and her family were their that evening. We all had so many emotions running through us. I had never asked God why before but now I did. I told God also that I was angry. He already knew it so I might as well say it. I watched others with their children walking, playing, talking doing all the things they told us that Cobyn would not do. I was jealous. I knew I shouldn’t be but I could not help it. God forgive me. We brought Cobyn home on Feb. 15th with the thought we could do nothing but make him comfortable. We didn’t even know if we would make the 2 hr. trip home with him. At the hospital the had talked T.J. and Stephanie about signing the DNR for Cobyn. They convinced them it was the right thing to do. We made it home with him and the outpouring of love and support was beyond belief. Something was still not right. We were contacting the funeral home, trying to get his dedication and baptism service set up. We were all just morning and still something inside of us said wait! There has to be something else we can do besides watch him die. I got on the net and started to search. Everything kept leading me back to a group called Rays of Sunshine. The more I searched the more this site kept popping up. I thought okay maybe I should try being a part of this group. Stephanie and T.J. did not have the time or strength at this time. What a God send this group was and is. We started posting on the site and an overwhelming response. Great advice started pouring in. No better advice than from those who have had first hand experience. We sent pictures and everyone responded the same. Get the shunt! We took Cobyn to a different neurosurgeon at UCLA and the first thing he said when he saw him was he needs a shunt. Cobyn received his shunt on March 7th. What a huge difference. Guess what? Cobyn hears, we believe that Cobyn at least sees light, he feels, he has gained a few ounces and has grown 2 1/2 inches. We believe he know those who are with him all of the time. He knows when Nani (that is me grandma Regina) sings Jesus loves me to him. He know his moms touch and his dads voice. What a blessing he is to us and it is true God does not put more on us than we can bear. What a lesson he is to us and what a new purpose we all have now. Each day is a miracle day for us! Cobyn will be 7 weeks old on Easter Sunday. Praise God!

Sadly, Cobyn passed away on December 26, 2008