I have to start this story nearly five years before Benedict’s birth, when my sister and her husband discovered at their routine 18 week ultrasound that their first child was going to die. Thomas Walter had anencephaly, a fatal neural tube defect where the top of the spinal column fails to close. We were all devastated, especially Clare and Tom. They decided, against some of the advice they were given, to lovingly carry Thomas Walter to term – to cherish him for the short time he would be with them. Labour was induced at 37 weeks and Thomas Walter came into the world. He lived for 17 1⁄2 hours, in which time he was visited and held by many friends and most of his aunties and uncles, including Mark and myself.
Mark and I married less than two months after Thomas Walter’s birth and death. Pretty soon we were expecting our own first baby. I was very nervous when we had our ultrasound. Fortunately everything was fine and we had a beautiful baby girl, Cecilia. Just over two years later Sebastian was born. In 2000, we were very excited to be expecting our third child, the due date was set for the 17th of July, 2001.
Leading up to the 18 week ultrasound I was feeling very uneasy. I hadn’t really felt any movement, which was odd, because I had felt Sebastian move before 12 weeks. Generally, I am not a worrier, but I just couldn’t shake this feeling of uneasiness. I really believe that I subconsciously knew that something was wrong. I had measured 12 weeks instead of 13 weeks at my first hospital appointment. During the week before the ultrasound I caught myself daydreaming that I was on the phone to Clare and I was saying, “It’s happened to us, too!” I asked myself – why am I thinking this? Then, the day before the ultrasound, I had my monthly Midwives’ Clinic visit and the midwife let me listen to the baby’s heartbeat! Oh, I was so relieved!!! So, the next day – Valentine’s Day, it was with no fear, just pure excitement that we awaited our first look at our baby.
The appointment didn’t start well. We had left home in a rush that morning and had forgotten to bring in the appointment slip. The sonographer was hesitant to do the scan without the official slip. I felt so disappointed, I was looking forward to seeing our baby! Eventually she agreed to perform the scan on the condition that we would get the form and bring it in immediately after the scan. I felt so excited as I lay on the bed and she began to scan my belly. After all, I knew my baby was alive. I’d heard the heartbeat only yesterday, what could have happened since then?
As she began to scan she showed us that the placenta was lying across the ‘os’ or opening of the cervix – ‘possible placenta previa’- meaning that I might need a cesarean delivery. She explained that this was not necessarily a problem; depending on how the uterus stretched – the placenta may no longer be covering the ‘os’ at term. Then she began to look at the baby and she became very quiet. She halfheartedly pointed out the feet, but she didn’t really say much at all. I thought this was odd because she had been so chatty about the placenta. After a few minutes she said that she was very sorry but Mark would have to go home now and get the form. I thought – there has got to be something seriously wrong, there is no other reason why she would suddenly send Mark home in the middle of the scan.
I sat in the waiting room and waited for over half an hour while Mark made the trip home and back. It was a very long half hour! The sonographer kept coming in to see if he was back yet, she said something like, “I just have to get someone else to check my pictures, no need to panic you just yet…” Which said PANIC to me (in big capital letters). The screen was not really facing me properly, but I had seen her going over and over the baby’s face. ‘What is it?’ I was thinking, ‘Doesn’t my baby have a nose or something?’ But deeper down my body seemed to be chanting, “Anencephaly… anencephaly… anencephaly…” over and over. I desperately wanted Mark to get back, he seemed to take forever!
When Mark finally returned we went back into the ultrasound room with the sonographer and her superior. She showed him the placenta and he repeated a similar explanation to the one she gave us. He then took some of his own measurements. Eventually he turned to us and said, “Now, there is a problem with the …fetus. We’ll get someone down from Obstetrics to explain it all to you, and perhaps it’s best if you save your questions until then.” I know from his pause that he would have said ‘baby’ if there had been nothing wrong. I felt annoyed that my child was not being given equal treatment, just because there was something wrong. I wish I had just said, “Is it anencephaly?”, but instead I cried, and let them lead us to the room where we were to wait.
The room where we had to wait was very, very cold. I kept saying to Mark, “It doesn’t have to be fatal… It could be anything… a heart problem, or kidneys, or lungs?” I wish that they had told us straight away. We waited there for over 45 minutes for someone to come and tell us what was wrong!
During that horrible time of waiting, I began to play a little fantasy over in my mind… The Doctor would come in and say, “I’m sorry, but your baby has Down’s Syndrome” and I would reply, “Oh, that’s ok! I thought you were going to say that our baby was going to DIE!” Then I would pick up my bag and we would go off to our planned Valentine’s Day lunch!
When she finally came in, the Doctor sat down and asked if we had been told what was wrong. We said no, and she began to explain… “There is a problem with the baby’s skull…”
I gasped and buried my face in my hands. So many images flashed though my mind – Thomas Walter squeezing my finger as I held him… his funeral… seeing his tiny coffin lowered into the grave… hugging my sister… someone saying to me, “If it had to happen to anyone, Clare’s the one who could handle it” (which stuck with me because I thought it was such a bizarre thing to say!)
Mark said, “Do you mean anencephaly?” She said yes, and then asked if we knew about anencephaly. Mark explained about Thomas Walter. She asked when he had been induced, then she told us that there were two options. We could continue on with the pregnancy, as Clare and Tom had, or we could terminate. I said, “No, we wouldn’t do that” and from that moment on we never had any pressure put on us at all. I am sure that our prior experience of anencephaly protected us from the pressure and misinformation that many parents faced during their pregnancies.
When we arrived home, Cecilia, now 3 years old, asked if she could see the photo of our baby. I said, “They didn’t give me one today, I’ll have to get one next time I go to the doctor.” She said, “Are you a bit sad, Mama?” And I replied, “Yes, our baby’s a bit sick – it has a sore head.”, then she gave me a cuddle. I wondered how we were going to explain to her that our much looked forward to baby was going to die.
The next few weeks are a blur. Both our families were very distressed for us. They provided us with support, and helped us in many practical ways, with cooking and baby-sitting for example, as well as just being there for us. I read all the personal stories I could find on the Internet of people who carried to term their anencephalic babies. I found these stories so sad, but also so very uplifting! They portrayed how beautiful the lives of these babies are – no matter how short. I read about all the wonderful ways these families had made memories of their child’s brief life. Even though these stories made me cry, it was such a good, healthy cry! I needed to cry – I’d just been told that my baby would die!
We hadn’t been told the sex of our baby at that first ultrasound, so we arranged to have another one done. We also had the second scan video taped. We had searched our baby names books for a name we liked which also had a nice meaning. When the sonographer told us we were having a boy, I felt so happy to know that I was carrying ‘Benedict’ (meaning ‘blessed’) ‘Oliver’ (meaning ‘peace’).
Immediately after diagnosis I thought that the next four and a half months would be an unbearably long time. How could I possibly live through this whole experience? However, I was kept busy with all the plans and arrangements we were making, and looking back now it seems like no time at all. We had monthly Midwives’ Clinic visits to start with.
Our midwife, Maggie, was one of the first blessings we encountered. Right from the start she was willing to do whatever we felt would help us in our preparation for Benedict’s birth and death. She offered to have us come in every week, just to hear Benedict’s heartbeat, if we wanted. She was so willing to help in what ever way she could. She admitted that she had never been in this position before and that she wanted to take the lead from us. Apart from the genuine care she offered us, she also acted as our mediator, taking copies of our birth plan to all the relevant sections of the hospital.
Over those first few weeks, we gathered ideas from other parent’s sites. I began making lists of things I thought we should do to make as many memories as possible. We made up a little ‘Baby Announcement’ which said, “Mark and Teresa Streckfuss have been blessed with a new baby boy, Benedict Oliver. He is due on the 17th of July, 2001. A precious brother for Cecilia and Sebastian. Please pray for us as he has anencephaly and will not be with us long.” We sent this out to family and friends (and anyone we could think of, really) in the month after diagnosis. There were several purposes for this; the first was to ask for prayers and to tell people about Benedict having anencephaly, but it was also very important to me that he was not forgotten ~ I didn’t want people to just pretend that I’d never been pregnant. I also found an Internet support group ‘Anencephaly Blessings From Above’ and I learned so much from these wonderful people. There are over 100 members at time of writing, mostly women (and a few men) who have lost a baby to anencephaly, but also people like me who joined up while carrying. I think this club was the most helpful thing for me. It is so good to be able to get on the computer every couple of days and ‘talk’ to people who have been there before, exchanging ideas and getting answers to questions.
It turned out that I did have grade IV placenta previa. This caused several small bleeds requiring short hospital stays of 2 to 4 nights each for observation. I was in hospital seven times between 28 and 36 weeks. This too proved to be a blessing, because it meant that I had come into contact with most of the Maternity staff before Benedict was born. I was not a stranger to the hospital, and the staff were not strangers to me. Mark took time off work, and we were able to qualify for a government sickness benefit so that he could look after the children. This was especially good because it allowed him the time to focus on Benedict too.
At the hospital, Benedict acquired quite a reputation for hiding from the sonicaide. Every time they would try to find his heartbeat there would be a flurry of kicking and he would just disappear! It often took them several minutes to track him down again! Maggie used to joke that he was hiding in ‘the back room’ – a kind of secret compartment! In some ways I didn’t mind being in hospital all those times, because three times a day I would get to hear his heartbeat, and feel all those beautiful kicks as he tried to hide!!!
Because of the placenta completely covering the opening of the cervix, we had to have a cesarean section at 37 weeks. This was another well disguised blessing, I wanted a cesarean anyway. I had read statistics stating that babies with anencephaly born vaginally have a 50% chance of being stillborn. I couldn’t imagine facing labour with the thought that Benedict could be born still. I wanted to say “Hello” before “Good bye” and to me the only way of ensuring that was to have a cesarean. However, I don’t know if they would have let me have one without the placenta previa. It was VERY important to us that Benedict would be born alive!!!
So on Monday the 25th of June, at 1:52pm, Benedict Oliver was born. He lived for 24 hours and 13 minutes, dying at 2:05pm on Tuesday. I don’t think I can possibly tell you how beautiful he was, or how sweet he smelled, or how much I wish those hours were frozen in time. He wore the tiny little premie hat the hospital gave us. I had thought it would be way too small, but it fitted perfectly! His face was so sweet, he looked just like our other children had at birth. He was just perfect! He weighed only 5lb 9oz (2600grams) but he was very chubby and measured 46cm long. He cried out at birth and several other times during his life – not a loud healthy baby scream, but a cry none the less.
He cooed, and made a soft little pah-pah noise when he breathed. He had light brown hair, ticklish feet, and once he sucked his thumb for about 15 minutes!!! We took so many photos, about 13 rolls while he was alive. We took both colour and black and white shots and I am very glad we have both. The time we had with him was so precious.
We had arranged for a priest friend of ours be present at Benedict’s birth. So, as soon as he was born, Fr. Colin was there to baptize and confirm him. Fr. Colin gave us great support. He met with us while I was pregnant and gave me a special blessing and went through all the arrangements with us, etc. Then after Benedict was actually born and he was finished his ‘priestly duties’, he grabbed the camera and started acting as ‘photographer’!!!
The staff were AMAZING. The theatre staff were wonderful – some of them cried, some of them prayed, many of them patted my head or my hands while he was being born. I was so happy to finally see him. I remember the anesthetic nurse saying, “He’s a little saint already now, isn’t he? He’s been baptized and confirmed – he’s perfect!” I thought that was so sweet of him! Then, when we were back on the ward, the midwives were just so beautiful. They left us as much as they could, popping in to do our jobs occasionally. They were so caring. Benedict wasn’t able to breast feed, and they helped me express collostrum which we fed to him on a spoon. He had three feeds in his life this way. I don’t think he ever got hungry, but I was glad I was able to nourish him like this. A few days after he had died, when my milk came in, I wished he had lived long enough to have some proper milk, but this made me feel all the more how glad I was that he had at least had some collostrum.
I have nothing but praise for the midwives and nurses who looked after us during Benedict’s life before and after birth. They looked after Benedict with such love, and with the respect he deserved. Maggie, the midwife we saw for our ante-natal visits, was particularly wonderful. She was with us at the cesarean, but she was not on duty ~ she was just there as a support person! She also came to Benedict’s funeral, and one of the other midwives was there too.
A professional photographer came in and took photos of Benedict on Monday afternoon. This was not something we arranged. Anytime the hospital has a baby stillborn, or who is going to die like Benedict, this photographer comes when they call him – anytime, day or night – and takes photos for free. We are so grateful to him for this service. He took some beautiful shots of Benedict’s hands and feet, and some of Mark and I holding him (which is really good because Mark took most of the other photos so there’s not a lot with both Mark and I in the shot). This photographer also does the healthy babies’ photos, and because he was coming in the next morning, he got our photos ready and brought them in to us the next day! It was so good to have these beautiful photos to look at that afternoon after Benedict had died. We also had a lady come and take molds of Benedict’s hands and feet. She did a beautiful job, the molds are so clear you can see his little fingernails, wrinkles and creases.
Benedict had lots of visitors. He met Cecilia and Sebastian, both sets of grandparents, all 14 aunties and uncles, 21 of 24 cousins, his godmother, and another priest friend of ours. One of his cousins even brought his bubble mixture to the hospital and blew bubbles for him! After about 10pm we had him to ourselves. It was so nice to have all that time with just the three of us! We were so very, very tired but we didn’t want to sleep, we didn’t want to miss what time we had left with him. I kept making little goals for him, please make it to 12 am, please make it to 17 1⁄2 hours (which was how long Thomas Walter lived for), please make it to morning… I was so proud of him living for as long as he did, I wanted to be able to say that he lived for a day. Eventually we were so exhausted that we took turns dozing, although I slept so lightly that I woke every time he moved, I think! We both sang to him and Mark read to him, but mainly we just held him and loved him.
The nurses told us that his colour would change as he became weaker. They kept telling us how good his colour still was. He started to have seizures on Tuesday morning, but his colour would always return afterwards. Then, after he died (without his colour changing significantly) I think one of the nurses felt bad, she came in and said something about him going quicker than she expected, but straight away I said that we had over 24 hours, which was far more than we had ever hoped for! We really were so grateful for the time we were granted with him. After he died we bathed him and dressed him. We took lots more photos, and we video taped the bath so that we would be able to see all of him. We kept his body with us over night, and until the funeral director came to get him on Wednesday afternoon. Mark was able to stay with me in hospital the whole time. It was great that we could be grieving in there together.
We came home on Thursday morning, and on Thursday night we spent hours getting the cover of his funeral booklet done. It took a bit of fiddling around, but I was VERY happy with the final result. It had a photo of Benedict’s face on the front, a photo of his feet on the inside back cover, and a poem on the back. I had typed up the booklet before he was born, so all I needed to do was add his dates and do the cover. I was very glad that I had everything prepared beforehand. It meant that when he was born, we could just think of HIM, we had nothing else to worry about.
On Friday night we had his body at home and our families came over for a short time to say good bye. I was worried how this would effect Cecilia and Sebastian, but it was really great for them. The times they saw him in the hospital were too short, and with too many distractions. We have some beautiful video footage of Sebbie vigorously rocking Benedict in the cradle saying, “Baby, baby, baby!” (Bay-beee, bay-beee, bay-beee). Cecilia sang to him in the morning, and made sure he had his teddies with him. She looks after his teddies now.
He spent the night in the cradle by our bed, and in the morning I dressed him in the outfit I’d bought to bury him in. It was very hard to wrap him up for the last time and put him in the coffin. It was even harder to close the lid and know that I would never see his sweet face again. I am so glad I have so many photos, I look at them all the time. We put lots of things in the coffin with him: a rabbit toy, 1⁄2 of a Mizpah coin (I wear the other 1⁄2 ), rosary beads, a miraculous medal (which had been pinned on his blanket at baptism), a guardian angel pin and letter from his Godmother, a drawing from Cecilia, a lock of hair from Cecilia, Sebastian, Mark and I, and he was snuggled up in a cozy red polar fleece blanket I made for him. We drove him to the church in our car, and it was very sad to think that was the only time all five of us would be in the car together.
The funeral was not as hard to deal with as I expected. Generally I get VERY upset at funerals and that is, of course, what I was expecting at my own baby’s funeral. I think that normally the funeral is the one ‘grief point’ with other deaths, but we had been grieving over Benedict for four months already – so the funeral was not as intense as we anticipated. Naturally I was sad, but not hysterical like I thought I would be. Benedict is now buried beside Thomas Walter at the small cemetery where we live. It is very sad to go to the cemetery and see his tiny little grave, but I am glad he is right next to his cousin. It is a comfort to have them side by side, especially when the same defect caused their deaths. Benedict and Thomas Walter have another baby cousin, Peter Francis, buried nearby and it is nice to have the three of them together.
You maybe wondering at me referring to my son as ‘beautiful’ and ‘perfect’ when he had anencephaly, which is an obvious physical defect, but he was beautiful and perfect and every other cute baby description you could think of ~ he was my son!!!
I don’t love Cecilia and Sebastian because they’re healthy, I love them because they are my children! I miss him so much, but I wouldn’t trade his life for anything. And while this has been the most painful experience I’ve ever had to endure, it’s probably been the most beautiful as well. Benedict spent his whole life in the arms of people who loved him ~ who could ask for a better life?