Our family was really excited, when I announced my latest pregnancy. At the time, the youngest of my six children, Ethan was sixteen months and my eldest son Adrian was 18. They were all enjoying Ethan so much, that they eagerly looked forward to the new arrival. The baby was due to be born on the 8th November, 1998 , four days after our twentieth wedding anniversary. I had joked to my husband Greg, that this baby, was my wedding anniversary present to him as a sign of our commitment to our marriage.
With the previous six pregnancies I had never ever felt even remotely nauseous. When women complained of morning sickness, I could only imagine what they meant. But with this pregnancy I felt unwell from even before I took the pregnancy test until about ten to eleven weeks. In hindsight I wondered whether there was something different about this pregnancy. I had already given birth to three boys and three girls, but not in that order, so it wasn't as if this baby was a sex different to what I had carried.
I gave birth to Ethan just over a month before my fortieth birthday. He was the biggest of all my babies and weighed in at a huge 10 pounds 6ozs and was 54cm long. I had always had dream pregnancies, no sickness, no problem even with high blood pressure etc. No worries whatsoever, and I had just taken it for granted that this pregnancy would be no different except that now I was 41. I knew the risks were higher of Downs Syndrome, but I know personally women, who have given birth to Down Syndrome babies before they were thirty. And I also have two very dear friends, who both gave birth to their seventh children, a few months before their 44th birthdays and both babies are perfectly normal, healthy children. and if I was carrying a baby with Downs I would have continued the pregnancy anyway.
I refused the AFP test at sixteen weeks, because I have known of readings to give misleading and worrying statistics, so I didn't bother. When I went for the routine ultrasound on 9th June 1998, the only reason I wanted it done was because I wanted to see the baby on the screen and find out the sex of the baby. I felt the baby was a girl, and I'd had a scan with all the other pregnancies, but Ethan was the only one where I asked the sex of the baby.
So along I went with four very excited children eagerly awaiting the scan to see whether they would have a brother or sister. Simon at 17 and Katie at 7 had never seen a scan before, but Megan at 13, Kirsten at 10, had come to see Ethan's scan so they knew what to expect. The radiologist, ironically was a man I had known personally, when he and I had worked at the same hospital over 20 years previously. I thought at the time it was nice that he was doing the scan. When I'd had Ethan's scan it had taken a good 45 minutes because they were so thorough. He had only been scanning me for about 5 minutes when he said he needed to get the other radiologist to check as well. I thought that was funny because with Ethan the radiologist had scanned for at least thirty minutes before getting a woman into check. Well the second man came and within a few seconds, it seemed, he asked all the children to leave the room. I thought "What is going on, what's he matter"? He finally told me, after really avoiding the obvious answer, that the baby would die. But, because I was so dumbfounded I can't remember his exact words but it would have been along the lines of "Not compatible with life". Because he was Chinese I found him very hard to understand so I was trying to get the man who I knew to explain what exactly was the problem and what did he mean. Then, after I understood the enormity of what they were saying, I asked if he could please tell me the sex of the baby and his reply was "It's not particularly relevant". I was in such a state of shock and felt so vulnerabe there by myself that I didn't demand my rights to have him at least try to see the baby's sex. I can't remember if the word anencephaly was actually mentioned at the time of the ultrasound or only later at the doctor's surgery. I had never heard of anencephaly before only of spina bifida. They may have explained what the problem with the baby involved but they were not very good at explaining it to me. I only walked out of the room knowing that my baby was going to die and would be very lucky to live for even 2 minutes because of theanencephaly and extent of the spina bifida. She had what is called myelomeningocele and anencephaly. This is an abnormal opening in the lowest of the spine and in her case a sac containing the meninges(of the brain) at the top of her spinal cord. The sac bursting is probably what caused her eventual death much sooner than the anencephaly. She had the severest form combining all neural tube defects.
The radiologists were very anxious for me to go back to my own G.P. as soon as possible, so I ended up going back on the same Tuesday. They thought if I went back to my doctor that he would convince me to have a termination. But they didn't reckon on my love for this child and my determination to carry this child whatever the problem.
I will never forget coming home to my husband and him asking excitedly "Well is it a boy or a girl?" and having to tell him that our baby was going to die. I wouldn't wish that on any woman and it was devastating for all the children because they knew that something wasn't right when they were asked to leave the room. The same afternoon I did go back to my own doctor and Greg and I asked lots of questions. He advised us to think it over and come back the following Monday, again I feel he thought that if I thought it over I would not continue the pregnancy. But we had already told him that I would continue the pregnancy regardless of having another six days to think about it . He explained to us that if spina bifida was the baby's only problem it was so severe that the baby would never walk. But we would have welcomed even a handicapped child in preference to losing a child.
Before the ultrasound I had mixed feelings. I was 18 weeks and 2 days when the scan was done, and as this was my seventh pregnancy I knew what to expect with feeling a baby move. And I had felt nothing and this had been going through my mind before I went for the scan, so maybe in a way I was preparing myself for something but definitely not for neural tube defects.
The reason I wanted to know the sex of the baby, especially after the diagnosis, was because I wanted to name the baby and carry them as a little boy or girl. And I would very much recommend to anyone diagnosed with carrying a baby with anencephaly or any other fatal defect to find out the sex and name the baby and refer to it by name.
To get another ultrasound done I finally agreed just before 22 weeks to go to the obstetrician, who I had decided on to see me through the pregnancy. He liked to do his own ultrasound to see what he was dealing with and so we have a video tape now of our baby during the scan. He told us that he was fairly confident that I was carrying a girl and because my family doctor had written on the referral that I wouldn't consider ending the pregnancy, he never mentioned it for which I was grateful. I always felt I had to defend myself because I wanted to carry this baby and there would have been more pressure if I hadn't been so determined.
The obstetrician was very kind to us and answered all our questions and on the way out he gently put his arm around my waist as I walked back to the counter to pay the account and he said "I really admire your fortitude". I was very touched by him saying that but I nearly said " this is my baby and this is the only time I will ever have with this baby so I'm not cutting this time short for you or anyone else". From that day on she was named Annalise Maria Therese. Annalise means Anne and Elizabeth, which in turn means Full of Grace and Consecrated to God. To me she was Full of Grace and Consecrated to God because she would be going straight back to God, as the obstetrician said he was 99% sure that the baby would be stillborn.
Annalise never moved at all until almost 23 weeks and when she did I got such a surprise that I really thought maybe she had died. But that night she moved slightly again and then I knew she was still alive. I am really glad that she did finally move or else I would never have known when she did eventually die. This I know was one of the hardest aspects of the pregnancy the fact that for so long she never moved. Even though I knew she would die it was as if she was dead inside of me already till the day she finally moved and that was wonderful. So when she finally moved after so long it was like a miracle and I loved every movement, but these were never the moves of a normal baby during pregnancy. In Annalise's case it was because of the spina bifida, not the anencephaly, that is why other women carrying anencephalic babies often don't know there is a problem if they haven't had an ultrasound done. My obstetrician had also told us that there was a 60/40 chance of me going overdue and that worried me that I might never go into labour naturally. This is another problem associated with anencephalic babies that they usually can't stimulate labour.
Our family were very open about the problem with the baby I was carrying and I told people because I didn't want people to avoid speaking to me and not knowing what to say to me if they heard from someone else. And in the long run this was the right way to handle this for me and people were not surprised when she died. We received a lot of prayer support from our church and friends and most of my relatives, which gave us the courage and the strength to continue on. Only a few friends found it hard to understand that I wanted to continue the pregnancy, knowing the baby would die anyway. Knowing God was going to take her back from me I didn't want one day less carrying her than He would give to me.
Every day I carried her brought her death one day closer and emotionally this became difficult around the 22 to 23 weeks when there were less weeks to go in the pregnancy. By that I mean at 18 weeks I still had the potential to carry her at least another 22 weeks, but by 23 weeks I was down to only 17 weeks to go and that I found really hard and did go through a stage of depression around that mark, but pulled through it. I could have done no less than give her life while God allowed it. I did put on a fair amount of weight but most of this was amniotic fluid. Because anencephalic babies cannot swallow their own amniotic fluid, like normal babies do, the fluid tends to build up inside. On my last visit before Annalise died I was 27 weeks pregnant but the fundus was already measuring that I was 34 weeks so the polyhydraminios was starting to become evident.
I found it a very lonely and isolating pregnancy as there was no one I knew who had gone through the same experience to be able to share my thoughts and feelings with and it was very difficult to obtain any information. There was nothing in the town library, very little in medical books I have at home and the doctor seemed reluctant to show me any books, so I finally turned to the internet. Before this I had never turned on computer in my life and now I will be forever grateful for the internet for the friends and opportunities it has opened up for me to be of support to other parents carrying their babies to turn. In June/July 98 there was only the personal stories under the Anencephaly Support Foundation and I found these supportive, knowing that these women had been through, what I was now going through, but at the time there seem to be no valid email address that I could make contact with any of these women. How I would have loved to have someone to have supported me! Plus the internet was the only place that I could find pictures and information about anencephaly at all and so I was prepared for how my baby would look.
I wasn't shocked when I saw Annalise, just really sad that this little baby had tried so hard to live to be with her family. Since 1998 there is much more support on the internet with many women writing of their own personal experience and offering support to other expectant mothers and I feel really grateful to these women for being there for other parents in need of support. I have made some truly wonderful friends through the internet, who have been through the same tragic loss as myself, I just wish we could have become friends under different circumstances. It takes the mother of another anecephalic baby to be able to understand and to share how you are feeling or have felt.
By knowing in advance that Annalise was going to die it gave me time to prepare psychologically and also to look into funeral directors and cemetery plots etc., so this was done before I was most vulnerable after the birth/death of my baby. It was really sad going to the cemetery, where we intended to bury our baby, knowing in advance that this was where she was going to end up amongst all these other little babies graves, where so many other brokenhearted parents had stood before us and that was very emotional. Annalise's step-grandmother knitted her little burial dress, bonnet and booties, weeks before she died and this was very special to us because of all the love that was knitted into these clothes for our little girl.
Annalise ended up dying in utero I think about 10.30p.m Tuesday 11th August. I remember feeling a really unusual movement/sensation as I turned to go to sleep. I never remember feeling her move again. All day Wednesday I waited and prayed that she would move but nothing, so first thing Thursday I went to my G.P. and he couldn't find a heartbeat with the fetal monitor. He asked what I wanted to do and I said have an ultrasound to confirm she was dead and then to be induced. My obstetrician was happy to go along with that and so I went to hospital that afternoon and the induction started at 4.30pm after the scan showed no heartbeat.
I could have had an epidural during the labour but I coped without and even though she had been transverse(lying across) during labour, she turned before I delivered her. The amount of amniotic fluid that came out was truly amazing it was huge and I visibly deflated. Annalise was delivered about 6.50am,on the 14th August, 1998 after the amniotic sac delivered first. She weighed 560g, which is 1pound 4ozs and was only 10 inches long due to anencephaly. I can still remember her being born with one little eye about 3/4 open and lifting her other little eyelid to look into eyes that were blind and would never see outside the womb. And I remember looking into her little mouth at the gums that would never grow teeth and as I write this almost seventeen months later it still makes me cry.
I was very lucky because I never experienced any afterbirth pains and my milk never came in. My doctor had told me that maybe my milk would not come because physiologically I wasn't preparing to give birth to a live baby. Maybe he was right because I never had any problems.
We brought Annalise home to our house about 6 hours after I delivered her. I will be forever grateful to my friend Debbie, who had told me weeks previously about someone she knew whose baby had been stillborn and the hospital had asked her if she wanted to take her baby home. If I hadn't found out this I would never have known that it is possible. I just had to arrange this with my funeral director, and I had discussed this with her before Annalise died. So there was never any problems.
This worked very successfully for me and my family and to be honest this was the best thing to come out of a very sad pregnancy. When you find out your baby is going to die you go through all the emotions and all the what you will never be able to do. Silly as it sounds when I first found out I thought I will never hold this baby in my arms never bath it, change its nappy etc. And I didn't bath Annalise but that was only because her skin was so fragile from lying in water in utero that I didn't attempt to, but I did hold her in my arms and I did kiss her and dress her and put her nappy and her booties. on etc. Maybe only once but I can say I have done it.
I remember, when I found out at 18 weeks thinking I will never bring this baby home like all my other children, but I did bring her home, just like the others. All wrapped up in her shawl anyone seeing us leave the hospital that day would never have known we were carrying out our dead baby. Our children were so excited and Simon nursed her in the front seat all the way home. If we had been made to leave her at the hospital or take the children to see her in a funeral parlor I don't know that they all would have coped with her death as well as they all have done. Besides we were her family so the most natural place for her to be was with her family.
I still can picture her in my lounge room or in the kitchen or in our bedroom. We put her in Katie's baby doll capsule, which we still have and whenever I see it I still think of Annalise in there. My only regret is that I didn't get to spend more time with her at home. With so many visitors and phone calls there just wasn't the time and that is the only thing I would do differently, I'd make the time.
When visitors came no one was forced to see her if they didn't want to, because she was in the bedroom because it was winter and the loungeroom was too warm for her body. But I was like any proud mother and wanted to show off my little girl. All dressed up in her little dress and bonnet she looked like a premature baby, with all her little tiny fingers and toes, even down to all her fingernails, toenails etc. Which to this day amazes me that she could have everything else so perfect but such major defects. She stayed pink from the time she was born till late Sunday afternoon.
We took a video tape of her and lots of photos but not enough photos and thats another regret. Because you can't see what is taken till after the development you think you have more or better photos than what you really have. So that is also something I would do differently if put in the same situation.
Three days after her death we had a Catholic Mass, which I would have had for any of my other children, so even though she died before being baptised it was really important to me. This was the final part of the grieving process. At home we made a garden with the plants given to us on her death and we have an angel and a backboard painted with Annalise's Garden on it outside our dining room window and we can see it everyday and think of our little Annalise. I think it is a lovely idea when parents make a garden as a memorial to their child and a lot of parents do so.
I have really strong faith and I truly believe I will see Annalise again after I die and that she will be risen up perfect, because she was so pure and innocent, after the Resurrection of the Dead at the end of the world. I believe my faith helped me to cope better with her eventual death. I don't know how any parent survives the death of their baby without the promise of one day being re-united.
My husband and children were all very 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 had been something wrong with them I would have terminated them as well. I also believe with support more women would carry their babies to term and that doctors try to pressure them into inducing early or either terminating with all the so called problems associated with carrying an anecephalic baby. The only real problem that may result is the carrying of excess aminiotic fluid, which in some cases can cause problems with the organs of the women carrying their babies, but this is rare. By that I mean too much pressure on the uterus, but any normal pregnancy carries a certain amount of risk too, with complications arising during pregnancies like pre-eclampsia, placenta previa, diabetes etc. And if problems arise with the labour not progressing or continuing as normal, a caesarean is performed.
Everyone grieves when they lose a baby or child, but at least there was no guilt on my behalf, except that I was not taking folic acid. That to me is the only "what if I had taken folic acid" but I didn't realise the significance of folic acid and I hadn't taken with any of the other pregnancies, but now I nearly beg women to take it, who I know are trying to get pregnant or are early in the pregnancy. Because I was trying to get pregnant. I definitely took no medications so there was nothing taken that could have caused the anencephaly. As my obstetrician said to me "It was an act of God". He also said I had more chance of a miscarriage at my age, than having another baby with anecephaly. And he was right.
Even though we lost her, we all say that we would rather have had Annalise to love and hold, than to have never have had her or conceived her. She will always be a very important member of our family, just not able to live here with her family.
Every life comes from God and when the time is right God will take life away. He knew my time with Annalise was enough at 27 weeks 5 days. I would do it all again just to hold her in my arms again, but I'm afraid that if there was a next time I might not hand her back. My faith has increased through my experience and I thank God for the opportunity to carry and give birth to little Annalise, our angel in Heaven. Life is so precious and fragile, never to be taken for granted is what I have learnt most from this.
Written by Sue Mansfield 12th January, 2000 with love and gratitude to my daughter Annalise, who has taught me the true meaning of love and the fight to live against huge odds