Personal Stories
Annalise
When my seventh child was diagnosed during a routine ultra sound at 18 weeks 2 days with anencephaly, and spina bifida with meningomyelocele, my husband and I were in a state of shock. After six healthy children, three of each sex, with birth weights ranging from 8lb to 10lb 6ozs, this was the last thing we expected. We had just taken for granted that this baby would be born perfectly healthy like the others.
As I am 41 years old my only concern was that maybe the baby would have Downs Syndrome but not that she would be diagnosed as terminal. After recovering from the shock of being told that my baby would die I asked the radiographer if he could tell me the sex of the baby. Because he assumed I would terminate the pregnancy he said "Its not particularly relevant". As I was too vulnerable at that stage just being told that my baby would die I didn't stand up for my rights. But as I never considered termination to me this was very important.
Just before 22 weeks I found an obstetrician, who was to care for me for the continuation of my pregnancy and during the ultra sound he performed, he advised us that he was fairly confident that I was carrying a girl. From that night on she was named Annalise.
I never felt her move until almost 23 weeks, which was really hard because even though I knew she would die it was almost as if I was carrying a dead baby already. So when she finally moved it was like a miracle and I loved every movement but it was never like the movements of her brothers and sisters, so I never had doubts that the doctors were wrong. My obstetrician had told us that he was 99% sure that she would be stillborn and that I had a 60/40 chance of going full term or over.
Our family was very open about what was happening during my pregnancy, so no one was surprised when she died. We received a lot of prayer support from our friends, relatives and our church, which gave us a lot of strength. Only a few people found it hard to understand that I wanted to continue the pregnancy, but knowing that God was going to take her from me anyway, I didn't want one day less carrying her than He would give me. Every day I carried her brought her death one-day closer and I must say this was really the hardest part of carrying her. I could have done none less than give her life while God allowed it.
I put on a fair amount of weight but it was nearly all amniotic fluid. On my last visit before she died I was 27 weeks but the fundus was ready measuring 34 weeks so the problem of polyhydraminios was probably starting. I found the Internet so supportive to me reading of other parents, who had been through what I was now going through, so I didn't feel so quite alone. Plus looking at pictures of anencephalic babies on the internet prepared me for the worst so I wasn't shocked, just sad, when I finally had Annalise. So this is the only reason I'm writing of my experience in the hope that it will be of support to other parents.
By knowing in advance that my baby was going to die it gave me time to prepare psychologically as well as look into funeral directors, cemetery plots etc. so this didn't need to be done when I was most vulnerable after her birth. Annalise died in utero when I was about 27 weeks 3days. After not feeling her move for a day, I went to my doctor to be checked with a fetal monitor. He confirmed what I knew in my heart to be true. When he asked what I wanted to do I said to have a scan to confirm it 100%, plus find out what position she was lying in (she was transverse) and then to be induced. I wanted to be induced to get Annalise out before her body deteriorated from being dead. We wanted to grieve her as our little girl not a mess. So that was how we proceeded. Gel was inserted at 4.30pm.on 13th August and a second dose of gel inserted at 5a.m. on the 14th August. Annalise was born about 6.50am. She had turned during the labor and was born headfirst. She weighed 560grams which is 1lb 4oz and was 10 inches long.
I was very lucky because I didn't experience any afterbirth pains and my milk didn't come in, whereas before I'd always needed ponstan and panadine for the for the pains, plus I had successfully fed the other children, one even up to seventeen months.
We took Annalise home 6 hours after delivery. This worked extremely well for my family, my children's ages range from 18 years down to 22 months. To me this seemed a natural progression from having carried Annalise for six and a half months. She was our baby and we loved her, why should she have been left at the hospital or in a funeral parlor until her funeral.
My children or any visitors could see her at anytime, but people were never forced to see her. Plus she wasn't a freak to be hidden away. Dressed up in her little dress and bonnet she looked like just a premature baby with all her tiny fingers and toes, even down to all her fingernails and toenails etc.
Our children were never scared of her and would go in and kiss her or touch her. We took lots of photos and videotape, which we will always treasure- everyone is smiling in them all. We wanted happy memories of her, not sad ones. We didn't handle her too much but this was only because of all the body fluids associated with the open spina bifida.
Three days after her death we had a Catholic Mass where over 100 friends and relatives attended. This was the final part of the grieving process. She is buried in a cemetery with lots of other little babies, and we can put little toys, windmills etc. on her grave, and it looks really lovely.
Because of my strong faith I truly believe I will see Annalise again after I die and that she will be made perfect after the Resurrection, because she was so pure and innocent. I believe my faith helped me to cope better with her eventual death. My husband and children were all supportive of my decision to continue the pregnancy after we found out what was wrong with Annalise, but to me this was never in question. Plus, I felt a termination would have been a terrible example to my children - it would have said to them that if there'd been something wrong with them I would have terminated them as well.
Everyone grieves when they lose a baby or child, but at least there was no guilt on my behalf, as I hadn't contributed to her death. I don't smoke, or drink, and I wasn't on any medications, so I'd done nothing to cause her harm. As my obstetrician said "It was an act of God".
Even though we lost her, we all say that we would rather have had Annalise to love and hold than to never have had her or never have conceived her.
Every life comes from God and when the time is right God will take it away. He knew my time with Annalise was enough at 27 weeks 5 days. My faith has increased throughout this experience and I thank God for the opportunity to carry and give birth to little Annalise, our angel in heaven.
Sue.
Benjamin
We had been blessed with two healthy children, (two boys, then 6 and 8). My husband was very content with just two children, but I longed for another. I would pray for another child, but mostly I prayed for God's will. I knew if it was God's will for us to have another child, He could change my husband's mind. When I ended up pregnant despite our trusted method of birth control I felt it must be God's will. I also felt God must know my husband's heart better than my husband knew it himself, and that one day my husband would understand this.
Twenty weeks into my pregnancy a routine ultrasound revealed anencephaly. Now I didn't understand why God would bless us with a child just to take the child away. The doctor informed me of my choices. I didn't even have to think about it. Immediately I told him I would not abort. My best friend had an anencephalic baby just 3 years earlier. She carried her baby to term and I knew I would have done the same.
My husband was behind my decision 100%. We both prayed for a miracle along with many, many others. We received a lot of support from family and friends, from our church and from my doctor. I used to think how angry God must be with all the bad in the world. Then going through this, I thought how pleased God must be with all the love and compassion of his people.
The ultrasound also revealed a boy, so we named him Benjamin early on. Although I was praying for a miracle, I also knew Benjamin belonged to God. I turned the whole situation over to the Lord and prayed for His will. Even though it was the hardest time of my life, I really felt like the Lord was carrying me through it all.
My pregnancy itself went pretty smoothly. Benjamin was very active. I loved feeling him so alive growing within me. When the end of my ninth month came, I had very mixed emotions. I was tired of being pregnant, but I also knew I was my baby's lifeline.
I did not want to be induced, (which is very common with these pregnancies). I also wanted as many hours as I possibly could to cuddle and love on Benjamin. My friend had 5 ? hours with her baby I had hoped for at least that much time with my baby. The Lord is good. I went into natural labor 2 days after my due date. About 4 hours into my labor, I went to the hospital and was already 6 centimeters dilated. About 3 ? hours later at 6:32 p.m. Benjamin was born. He weighed 7 pounds 15 ounces and was 19 inches long. Labor was not too bad, but delivery was a little harder than my other two babies. I got to hold him almost immediately. He was so beautiful. With his little hat on he looked completely normal except for a little discoloration. We allowed close family to hold him including his two brothers. To know him was to love him. He was very special. He made cute little cooing sounds and even stuck his tongue out once. We took lots of pictures. We also had a molding kit and got his hand and foot print along with his name and birth date embedded in it. It is such a treasure. Since it was getting late our family went home. Benjamin had his mommy and daddy all to himself the last hour of his life, until the Lord took him shortly after midnight. He lived a little over 5 ? hours .
Although there is still a lot I don't understand, I do know Benjamin had an impact on many people's lives. We received several comments from the nurses at the hospital. One nurse sent us a letter that stated how Benjamin had changed her life.
I miss him deeply, but I know I will only be away from him a short while compared to eternity. In a way, I feel Benjamin was blessed to be taken away from a world with so many trials and sufferings. He got to go directly to Heaven.
In Christ's love, Cindi
Charles
Hi,
Twelve years ago this coming January, I gave birth to my anencephalic son, Charles.
Time has been a healer. I have leaned on and gained comfort from the LORD. But as time goes on, my memories seem get farther away, and I long for something to hang onto to help me keep Charles close to me, or keep his birth as signifigant now as it was. ( I can't seem to express to well what I mean.)
We had no family to lean on, as they all lived far from us, and my step-mom encouraged terminating the pregnacy. Our pastor and church encouraged us to go full term, but offered no support beyond that.
Now as I read these letters and stories of how other families coped, it makes me feel sad, because I see how we could have done things differently.
I found out that our son Charles, had anencephaly when I was about 7 1/2 months pregnant. One doctor urged termination. The other (my OB) encouraged me to go to full term. It seemed like a hard decision at the time, but we knew it was the only one, to go full term.
Charles only lived one hour and twenty five min. We should have had a camera with us to take pictures, but we didn't. Now, all we have is the medical picture of him taken after his death. We opted to have only a memorial service after we had sent Charles's body down to my home town to be buried. The doctors had advised against traveling the 250 miles so soon after delivery. My Pastor did not advise us as to how a memorial service could be handled. It was nice, but not very personal.
I wish I had held Charles longer. I wish I had tried to nurse him. He probably could not have been nursed, but could I have tried? Was I to hasty with having labor induced on my due date?
I thought reading other parents stories would bring comfort, instead, I only think of what I could have or should have done.
Of course I know many of these feelings are surfacing now because it is the time of year when I first learned about my son's condition.
God has taught me so much over these past 12 years. I know God has made me a stronger person and now that I have another son with health (heart) problems, I find it easier to take his health one day at a time, because of all I learned from Charles. I learned what is important in life. I've learned that God takes us through valleys and Mountains.
I just pray that I could get past the guilt. I keep thinking about the folic acid issue. (IF only)