Well it's almost been 4 years. As this time of the year starts to approach, it is still hard on us. I didn't want to update or add anything to Andrew's story because I thought it is about him and I didn't want to take away from that. But then I thought I would like to know about other peoples lives after, so I thought a once a year update would be a nice remembrance of him.

Well Andrew was my 4th child and since then I did have another son, who I can't help look at and think Andrew would look just like him, again my son is not a replacement but he does help replace some pain and emptiness. I do hold tighter on to him as I know how precious life is. I think all of us who have experienced a lost understands that.

I was pregnant again this year. I again had similar things happen as when I was pregnant with Andrew. I was upset. I was told again I might have a child with a chromosome defect. I say I would have Andrew all over again in a heart beat just to have any time with him. This pregnancy I thought I already know it's Trisomy 13. They were offering a amino. It wasn't developing right and the heart beat wasn't good. I was told it probably wouldn't happen again and here it was happening. I just prayed. I didn't think I could handle having to make a hard choice again. I couldn't watch another baby die in my arms. I was being monitored weekly and was hospitalized. As we had moved to a different city and this cities hospital was not going to take chances and wanted this baby to survive. They were not writing it off, as a untreatable condition. Well 10 weeks into this pregnancy the babies heart stopped.

I think God knew I didn't want to make any kind of decisions and made it for me. I was very sad and at the same time I saw it as a blessing. I know that sounds horrible. I wanted this baby, was so happy to find out I was pregnant again, but when I was told chromosome defect my heart dropped I knew what we where up against again. As much as I felt blessed being able to see and feel Andrew, that I would never take back. I did feel comfort in knowing this time the decision wasn't on my shoulders. I am very sad for the baby dieing. I would love to see and hold this baby and put a gender and name to it, but at the same time I felt afraid and horrible knowing I was going to watching a baby suffer and fight for it's life. I would of course still carry the pregnancy to term and fight for it's life, even more prepared this time. But it didn't happen.

Since then my husband and I have had some counseling and was told, probably my husband carries something in his blood that causes this to happen. We were offered a blood test to confirm it, and were advised it needs to be done before we have anymore children. We decided not to have anymore. As we have 4 healthy children, 2 of ours together... biologically (as we don't consider mine, ours.) Since this I am doing good, I was sad and will be sad as that is a baby that died. Even if not born it is still a life in my eyes. But going through seeing what Andrew went though and us it does make the pain of losing a baby easier. if that is possible. It was been 3 months since I lost the baby.

As a family though we are strong. Doing good. The pain never goes away, as it is almost Andrews 4th silent birthday. It's hard to think what he'd be like now. But I do feel like his life is being lived in my son Lucas (new sibling - pictured right) who just turned 2.

I start to pull out pictures of Andrew on rainy days... as gloomy days are harder for me. I don't try to think about the bad stuff and just hold on to what he looked like and the love I feel. I like this sight it helps me to remember that time with him...not that I would ever forget but some details are starting to fade. The pain is getting better everyday it does get better but it NEVER goes away. It just becomes more copeable.

My husband's work does a lot of charity fund raisers and I have looked on the web sight for who is researching Trisomy 13 and I really didn't find a lot. I believe in my heart that babies born with Trisomy 13 are able to survive with it. Everyone is created perfect, it may not be society's view on what is perfect, but they are created exactly how God wants them to be. I would love to fund an organization that provided hope and offers survival to families. That won't say they won't operate. There are a lot of conditions children face that are fatal, but you don't hear doctors saying oh I can't perform surgery on them because they will die anyways. So why not do all you can for any child regardless of the condition. If they die at least they got the best chance, and you feel you truly did everything.

Give parents a real choice, as I felt I had no other choice. So anyways my husband is looking into starting a golf outing..one that will be held every year in remembrance of our son to fund family's with hope. I just need to find a proper organization. Hopefully we will have it started by Andrew's 5th Silent Birthday. Even if I have to start my own organization.

April Helmer
AJHelmer524@comcast.net 

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12-11-07

My husband and I planned to get pregnant, and I got pregnant the first try. This was my 4th child. All my pregnancies were good. So I thought I would not have any kind of problems.

When I was about 10 weeks I started to have contractions. I went to the ER. Where I was told being this early they would not stop the contractions, that usually there is a problem and my body was trying to get rid of it. I was very upset, no one would help me. I prayed to God to stop them, that no matter what was wrong I except it. To please not take my baby. My contractions stopped. I had a ultra sound that came out good. No problems. I was so happy and went about my pregnancy.

I was so excited at our ultra sound where you usually find out if your having a boy or girl. I really thought this was going to be a mommies little boy. I even invited a friend, not ever thinking there could be a problem. She couldn't make it so my husband went. Well I was told there were some things that didn't look right. The lady called the doctor out of a C-section, to come talk to us. He was there fast. I was told my baby is not developing right. He said I need to see a specialist. Made my husband and I wait in a special room away from the other pregnant women while they made an appointment at another hospital. We had to wait until tomorrow. I was shocked my head spinning. But from the very beginning I had already decided I can deal with whatever this is.

I went to the specialist who performed a 3D ultra sound. I had to come back again another day to consul on what to do. I was told my little boy, had a dandy walker. That this will make him retarded. He was unsure to what degree. Gave me an option to terminate. My faith is against abortion, my pastor said I would be asked to terminate. However I would never. I was told along with the dandy walker there was a cleft lip and his kidneys where red, an omphalocele, an extra toe, a small heart defect, and 1 umbilical cord. He said I had about 2-3 weeks to decide what to do. I went home and talked to my husband. I told him I was going to keep this baby no matter what. I offered him a divorce if he didn't want to handle this with me. I really wanted him to stay but I knew just because I want to raise my baby no matter what it might not be something he wanted to do. He was on board. He agreed this is the hand where dealt and he too already loves this baby. I was so relieved.

So I started see specialist for every condition he was given. I saw heart specialist who said my baby would just need medication when born. That the heart might even heal on it's own. Everything my baby had was repairable expect the dandy walker. I quit my job to prepare our home for a disabled child. I was so hopefully. Then about 6 month into my pregnancy I went into contractions again. They stopped them this time though. I was told at this time that if my baby was born tonight that they would not operate until they knew what was causing all these anomalies. I was shocked again. Here my baby could die waiting for some test result to come back before they will operate. I was mad. After leaving the hospital I made a meeting with the head of the NICU, who confirmed that there are Trisomy’s that are not viable with life and no one will operate until it's confirmed he doesn't have the worst Trisomy 13. I talked to my doctor and agreed to finally do the amino to prove my baby was fine to be operated on once born. I prayed it wasn't the worst case. My Sunday school class and pastors came to the hospital to pray while I had this test done. I was so scared the test would make me go into contractions before I could eliminate this Trisomy 13 thing. People brought us meals and we had so many prayers. Then the results came back Trisomy 13. I was devastated. I was at this time told my baby wouldn't live maybe an hour. If he doesn't die in the womb before delivery, and I had to decide weather to just let him go peacefully in my arms rather then taken away to NICU to die on tubes because they wont operate. I was just numb.

I still was going for stress tests 3 times a week. I am diabetic too. At this stress test the nurse was asking me about my insulin when I said I don't care. Why keep my sugar down if it's not even going to help. She noticed my monitor that my babies heart was dropping. She called the doctor. I was 8 months. My doctor come and said go home pack and we will induce tonight. He didn't think I could handle losing my baby inside. My husband and I went to have the pastor and our church family pray and had oils for healing. My pastor said in healing understand it may not be my way of healing. God may decide to heal the baby by taking him. I was scared but was ready. We had the healing prayed over us.

I went to the hospital. My doctor refused to do a C-section saying it would be harder on me, and the baby was going to die anyways. I was upset. My monitor that showed his heart beat was dropping. I wanted to give my baby the best chance I begged for a C-Section. They shut my monitors off and drugged me up so I would fall asleep. The next morning I had my son. After he was delivered the nurses kept looking at each other then the doctor shaking there head no. I thought he was gone. He wasn't. They handed him to me. He had a hole in the back of his head where I could see his brain, I saw the omphalocele, he had an extra pinky, and a cleft lip and palate. He was beautiful though. We opted no needles, no tests, to just make him comfortable with us. I heard him cry and whimper. He was almost 6lbs and 20 inches for a premie that is great. We told everybody not to come to the hospital as we wanted all the time alone with him except our parents and pastor. Every minute that past I got more scared. Hours had past and he even pooped, which they didn't put a diaper on him.

No one told me that with a cleft you need to suction him out every so often. I had to beg for a syringe when he started gurgling. I got him cleaned out and he was doing so good. I really thought he was so strong and would be able to live with this. I asked for a bottle, then the head of the NICU called me and said I thought you didn't want treatment. I said it's been hours since he was born can I give him a bottle, I couldn't nurse him as he had cleft lip and palate. She said no, it will only prolong his life and what needs to happen. I need to say goodbye. I was so mad, but didn't want to take away my time with Andrew. It was so late at night and I was so tired from delivering that morning and all of this. I just held him on my chest and feel asleep. I could hear him breathing. It sounded good. I had to go to the bathroom though so I woke my husband and handed Andrew to him. When I got back I could hear Andrew struggling to breath he had mucus stuck in his throat and I couldn't get it with the syringe. I has crying watching him struggle. I was so tired and my husband and I prayed with him and said it was ok to go, we love him and didn't want him to suffer to stay for us. It was the hardest thing I have ever done. I just held him then I couldn't hear him breath or gurgle no more. I knew he was gone but kept holding him anyways. My husband feel asleep so I paged the nurse quietly to have her come check if he was gone. She came and said yes, his heart had stopped. She took him to clean him up and brought him back cleaned and dressed. He was so cute. I take comfort in knowing he is with God, but I was scared that he was going to go without me. It was very sad leaving the hospital alone with no baby. The hospital was not great, they treated my baby worse than trash.

To anybody getting prepared on having a baby with Trisomy 13, please research. I regret my decision all the time but can't go back. I would of course have him all over again. But I wish I would have been given more options. I didn't know that a dandy walker build fluid on the brain and can cause death if not tapped. I didn't know until after that my son died chocking on his mucus. No one schooled me on what to do, that they are children that live with this. I was just told he is going to die, say goodbye. We all are going to die. So that's not a lie, but some children can live with this, don't give up hope. I can't go back and it will only drive me insane. But I will always wonder.

It has been 3 years since I had Andrew, and the pain still lasts. My friends were still having babies and tried to shield me, I would say I am fine don't worry but I wasn't fine I still longed for my baby. I would go to the store and people who knew I was pregnant but didn't know me would ask where is the baby. It was awful. I will always miss Andrew, but honestly I had another son who is now almost 2, and it does help. I know nothing will ever replace Andrew and I don't want it too. But having another son to hold and not think about what I am missing out on every stage does help. The questions and second guessing will always be with me, I know everything happens for a reason and I was chosen to be Andrew's mom for a purpose, even if I don't know what that is.

Every life is valuable you never know how much time you have if with healthy babies, children, people. I am grateful for this web site I wish I had found it sooner. But it brings me comfort in knowing I am not alone (not that I would want 1 person to go though this) but it helps me see other peoples decisions and what happened. It helps me in think that if I would have tried something else this still might have happened. That it isn't my fault.

April Helmer
AJHelmer524@comcast.net