Charlotte's Story

Charlotte with her mother and father

"Love bears all things, believes all things, hopes all things, endures all things."
1 Corinthians 13:7

It didn't take us long to want another baby after Benedict.  My cesarean with Benedict had been a 'classical incision', rather than the safer 'lateral incision', so we were distressed to hear that we would only be allowed to deliver by cesarean now, the risks of uterine rupture during labour were too high to try VBAC. We had always wanted a big family, but we knew that the number of cesareans I could have would be limited. We conceived again six months after Benedict was born. Dosed up to the eyeballs with folic acid, I was pretty confident of a healthy baby. I was offered a scan at my 12 week appointment and eagerly agreed, even though I was on my own. The OB turned on the scan and there was my baby, perfectly formed - but still. The OB was very nice, he gently told me that he should be seeing a heartbeat or some movement. He waited and waited. I looked at the screen, silently pleading with my baby, "Just kick, please just kick..."  But she had already gone, just a day or two before.

Having some understanding of loss and grieving after losing Benedict, we were able to deal with the loss of this baby quite well. We named her Hannah, and made up a booklet of what little memories we had - mostly just how we felt when we found out we were pregnant again, what doctor's appointments I'd had, how we felt when we learned that she'd died etc. Doing something - even such a small thing - was so helpful. I felt as if we created a space in the timeline of our family that was just Hannah's, and would always be just hers, and then it was OK to move on - she had her space. I've never felt that way about our first miscarriage (my second pregnancy), we didn't stop to allow a special place for that child - we didn't know how to grieve then.

Three months after losing Hannah we felt ready to conceive again. By this stage I had been on the recommended 5 mg of folic acid for about 13 months, as I began this high dose 2 months before Benedict was born. I was six weeks pregnant with Elijah on Benedict's first birthday. After a nerve wracking, although uneventful pregnancy, Elijah was born in January 2003. He is so precious!  It was such a relief to finally hold him in my arms!  We felt like first time parents again, it was such a change to actually bring our baby home and watch him grow etc. Every moment with Elijah is precious, we marvel at everything he does. Knowing that life can be so brief has enabled us not to overlook one tiny bit, and to see how Cecilia and Sebastian love him is just beautiful.

We knew we would not feel ready for another pregnancy for a long time after Elijah. The 2 cesareans, which had both been classical, were 18 months apart, so there were physical reasons for me - as well as psychological ones. The worry over anencephaly and miscarriage, the physical fatigue involved in pregnancy, the daily injections (due to a blood clotting disorder) all were substantial reasons for us to enjoy Elijah and postpone any thought of pregnancy until Elijah's second birthday.

However, when Elijah was just 9 months old, I found myself pregnant again! The first 'surprise' pregnancy we've had. The moment I knew there was a possibility of pregnancy I went and took my folic acid - the very day of ovulation. I should have been on the recommended dose of folic acid, 5 mg, for three months before conception and although I never missed a dose from that day on, I was overwhelmed by that terrible sense of dread again. I wrote on my 'pregnancy after loss' internet support group, "God has BIG plans for this baby... In order to create THIS child, God overcame my desire not to get pregnant, the Ovarian Monitor, AND my low progesterone levels... He must have BIG plans!!!!" The mental unpreparedness far outweighed the physical. It was not coping with another baby that worried me - it was the pregnancy itself. The anxiety I was experiencing was unbearable, we looked forward to the 12 week ultrasound to put my mind at ease. Of course our baby would be OK...

Ironically, it was the same ultrasound technician who diagnosed Benedict with anencephaly. As soon as she turned on the scan I could tell the baby had anencephaly. Even though I told myself I could be wrong, I could see the head was much too small. My heart raced and I waited. "What neural tube defect was it last time?" She asked us. When we replied, "Anencephaly." She said, "I'm sorry but it looks like the same thing again. Unfortunately we can't diagnose these things any earlier..." I thought, "Earlier???" 12 weeks was far too early if you asked me! But then it dawned on me, she thought we were going to have an abortion! I said, "We carried our son to term, and that's what we'll be doing again."  We didn't let ourselves fall apart until we got to the car, so the ultrasound technician didn't quite know how to take us. She said, "Oh, well I suppose it's more of a change of plans for you than a setback, seeing as you'll be going ahead with the pregnancy..."  I guess it looked like we were OK about the news, because we weren't hysterical. I thought in disbelief, "THIS was the Plan???"

So just when we were getting used to the idea of being pregnant, we had to adjust our plans again, this time to include the knowledge that we were going to lose another baby. We had told very few people we were having a baby at this stage. And worst of all, 12 weeks is far too early to determine the sex of the baby, so we didn't even have a name to cling to.

I was still afraid of miscarriage as I didn't feel any movement until around 20 weeks. My GP informed me that the scan had also picked up a low lying placenta. 12 weeks is far too early to diagnose placenta previa, but with my history of 2 classical cesarean scars and previous placenta previa it was a pretty high risk. I looked up 'placenta accreta' on the Internet and found that with 2 classical cesarean scars, multiple previous pregnancies, AND placenta previa I had a 47% chance. Placenta accreta is a complication where the placenta attaches deep into the uterine muscle, instead of just on the surface of the uterus. It almost always necessitates a hysterectomy. I felt like I had far too much on my plate.

Right from the start I couldn't help comparing everything to Benedict. As we felt that everything went perfectly with Benedict's delivery and life, we worried that this time things could only go worse. This baby couldn't live as long as Benedict, this baby couldn't be as beautiful, my cesarean couldn't be without complication...  Distinguishing 'this baby' mentally from Benedict was almost impossible, after all, his was an earth moving, life altering experience - it was not something we were supposed to have to do TWICE.

I had my first ante natal appointment after the diagnosis at 18 weeks. As the scan had been done at the hospital, I was sure that the results would have been sent up to Ante Natal. But as I sat in the waiting room for 45 min, surrounded by happy pregnant women, I began to realise that the information hadn't been passed on to the staff. I knew they would never have left me sitting there if they'd known. With a growing sense of dread I realised that I might have to break the news myself. A midwife finally called my name, as we walked to her room she asked me, "How are you?" In the kind of way you do when you are sure the answer is, "Fine!" I replied with a noncommittal, "Not too bad..."  I kept thinking, "When she opens my file... Then she'll know..." 
Unfortunately, as the consultation went on I could see that the scan results had not been forwarded on and I would have to say something. The midwife asked, "Have you had a scan already?" To which I replied, "Yes, at 12 weeks, and this baby has anencephaly..." She just looked at me for a moment, then she said, "But you've already lost a baby to anencephaly! Oh, that's just too much for one person to bear!" She was very nice, she tried to comfort me as, of course, I had completely lost my composure by this stage. I asked if Maggie would be able to handle my ante natal visits again, as she had with Benedict's pregnancy, and although she told me Maggie wasn't working in the ante natal clinic anymore she promised to sort something out for me. I almost felt more sorry for her than I did for myself right then. I can't imagine how awful it was to be in that position, with no fore warning or time to prepare yourself. Under those circumstances, I think she handled the situation admirably.

Two weeks later she rang me at home to say that she had spoken to Maggie who had readily agreed to do my ante natal visits, even though she only worked in delivery now! I felt an enormous weight lift off me. It was such a relief to know that Maggie would be caring for us again, I felt as if things suddenly started to go right for a change! She knew what to do... she knew us... she'd done this before... Things were going to be all right!

That same week we had our second ultrasound and were both pleased and saddened to hear we were having a girl. We had hoped for another daughter, a sister for our firstborn. After three boys in a row, we had begun to think that Cecilia would be our only daughter... It was hard to hear that it was a daughter who was not going to stay. But now we had a NAME, and what a beautiful name, Charlotte Mary! My placenta previa was diagnosed as grade III, meaning it was partly covering the opening of the cervix.

Naming Charlotte finally gave her her own identity, distinct from her brother. She had quite a different personality from Benedict. She was very active in utero, where Benedict was quiet. Charlotte never minded the Doppler checking her heartbeat; Benedict hated it. They were each unique.

How do you do this twice? With Benedict's pregnancy we'd done it all, were we supposed to do all those things again? Two mizpah coins? Post out prayer requests all over again? Should we use the same readings and songs at the funeral, or did we need to pick different ones? If we did the same things over, were we cheating Charlotte?

It took weeks to sort through these feelings, and in the end find peace with a plan for Charlotte's journey.  Some things we kept the same, like the funeral booklet which only had minor changes and one new Bible reading. Some things were done differently. Instead of posting out hundreds of individual prayer requests, we had a prayer request published in a couple of Catholic magazines and newsletters. This way we were able to reach most of the people we knew, and many more who were strangers. We also handed out this prayer request to people we would be in regular contact with, it helped to give them some understanding of what we were going through.

For a long time I had wanted to write down my feelings and reasons for carrying to term and this was intensified after Charlotte's diagnosis. I was in a position of having experienced my sister carrying to term, and then having my own baby diagnosed, so I had tasted two distinct carrying to term experiences. Perhaps better than anyone else, I knew how hard it is for people other than the parents to understand, because I had been an aunt and a mother of a baby with anencephaly. So I wrote an essay (Why Carry a Dying Child? A Mother's Perspective) explaining my thoughts, feelings, and the ideas which had been turning over in my mind ever since Benedict's diagnosis. I gave it to Maggie, some well-wishers who'd emailed me, some friends and family, and it spread on from there. Before long I received a request from the editor of Catholic Exchange web sit; they wanted to publish my essay! I had no idea how big their readership was; the day it was featured Benedict's site received as many hits in one day as it normally gets in a month! We were flooded with emails offering prayer and support.

Next, someone passed my essay to a sub editor of the Herald Sun newspaper in Melbourne, and we were asked if they could do a story about Charlotte. They came to our home five days before the caesarean to interview us and take some photos. The article was run in the Sunday Herald Sun the day before Charlotte was born. It was a double spread with photos across pages 4 and 5! Once again we were flooded with feedback - cards in the mail this time. We were surprised to find that the story had been syndicated in all of the capital cities around Australia. We continued to get 2 or 3 cards in the mail every day, often from strangers, until about 6 weeks after Charlotte was born. The newspaper ran a follow up article the next Sunday, (the day after Charlotte died) this time with a photo of Mark and I holding Charlotte in the hospital. It was heartwarming to see people respond so positively to our little girl's story.

Another thing we did differently - this time we prayed for a miracle. When we were carrying Benedict we just prayed, "Thy Will be done." Somehow I knew that he wasn't meant to be cured, and I was at peace about that.  But when we were given Charlotte's diagnosis my immediate thought was, 'Well, we'll HAVE to pray for a miracle this time, because there is no way I can handle losing another baby!' So we asked Mother Teresa to intercede for us before God, that He might grant our request and cure our little baby girl. Thousands of people joined us in our prayers.

Asking for a miraculous cure does not mean that we EXPECTED one, we knew full well that the answer would likely be "No." If miracles happened all the time, they would not be very remarkable. We were not at all surprised or disappointed to find at her birth that she was not cured. But we knew that God could choose to heal our baby, and it certainly gave us something to hang on to. All prayers are answered, just not always in the way we want. The prayers that were offered on our behalf at very least gave us a most profound feeling of peace, sometimes subtlely, at other times so intensely it was almost palpable. The time that stands out in both Mark's and my memories is right before Charlotte was born - the cesarean had been delayed by about an hour and we spent this time chatting with Maggie and Fr Anthony. Then Fr Anthony prayed over us, and as he blessed us we felt the most beautiful sense of peace and calm which stayed with us right through the day.  Neither of us have ever before experienced this kind of peace.

That is not to say I felt peaceful all the way through the pregnancy. There was a lot of dark, out-of-control feelings. At times I felt like a lightning rod, just waiting for the next storm to break. While pregnant with Benedict, I never really asked, "Why?" As my sister had lost a baby this way, it made more sense to ask "Why not?" But to have this happen twice! My heart cried, "Why, why, WHY?" Why couldn't it have been something she could live with? What could we be supposed to learn this time, that couldn't have been learnt from Benedict? And the most frightening question of all - Would this happen again? Eventually I came to realise that I will not be able to find answers to all my questions here. I need, rather, to deal with what is happening in my life to the best of my ability and 'Lean not unto thine own understanding...'

Having had placenta previa before, I was living in expectation of when-will-the-bleeding-start and wondering if this time I would hemorrhage and need an emergency cesarean etc. However I made it to 31 weeks before my first, very small bleed. I was in hospital for just one night and was then allowed home. An ultrasound showed a small bleed behind the placenta and grade III previa. I had two more hospital stays for bleeding over the next few weeks, the third bleed was much heavier and continued on (lightly) for 24 hours.  I felt like it was going to get serious with the next bleed... But the 'next bleed' never came! I had one last ultrasound at 36 weeks, and much to everyone's surprise, MY PLACENTA HAD MOVED UP!!! In 5 weeks my placenta had gone from grade III previa (partly covering the cervix) to high enough so as not to be even classed as a 'low lying placenta' anymore. This was very unexpected.

Now the likelihood of hysterectomy was small, and my anxiety about the cesarean was greatly reduced. I had been so afraid that if something was to go wrong with the surgery and I needed to be given a general anaesthetic, Charlotte could die while I was unconscious. I was so afraid of missing her time, I knew it could be short.

Thankfully, my cesarean went unbelievably well! The spinal anaesthetic was by far the best I've had, and I had been sure I'd completely fall apart while getting it - however, I was calm, comfortable, peaceful... and I couldn't believe they were finished when they told me! As for the surgery, they were able to do a lower segment cut (after 2 previous classical cesareans), I did not need a blood transfusion, my doctor checked my uterus and told me that it would be OK to have another pregnancy!!!!

It took a long time to actually deliver Charlotte, because in that last week she had turned and was breech. It seemed to take forever, and I was afraid that she had already died and they didn't know how to tell us. But eventually there was a little cry and there she was! Chubby and cute and covered in chunky vernix, and SO MUCH LIKE BENEDICT! The first hat she wore was a white bonnet. I selected a white one in case the doctor had been mistaken and the baby was actually a boy. But when she was first born she looked so very, very much like Benedict I found it really hard to distinguish her from him in my mind. This was something I'd struggled with after her diagnosis - to think of her as a baby in her own right, distinct from Benedict - it was easier once I found out that she was a girl, but once she was born they became all entangled again. So, as soon as we got back to our room we changed her hat for a pretty pink bonnet, and she became Charlotte again.

Charlotte was held by my chest so that I could see her. She looked so purple and still, I was really worried. I asked Maggie if she was breathing, and she said, "I think I'll take her over here and rub her down..." She told me the next day that Charlotte's pulse had dropped right down and she thought she was going to die there in theatre so she'd "...rubbed her down and given her a stern talking to..." I can just imagine what she said, something like 'don't you dare die on your mum and dad now when they've waited for so long to hold you...' When she carried her back she was beginning to get nice and pink, and we were unaware of how close we had been to losing her.

As soon as she was born Fr Anthony came in and baptised and confirmed her. He took a whole lot of beautiful digital photos, and some digital video too. These short snippets of video, taken on his digital camera, are so precious. We didn't know he was filming, so we were just getting to know Charlotte and it was very natural and unaffected. Fr Anthony stayed with me in recovery, and later completed the baptism ceremony back in our room. His presence was calming and uplifting and we were so grateful to him for being there for us at this time.

Charlotte met her siblings - our 4 year old was priceless, "Oooh she's SO cute!!!!!" Our 6 yr. old took a while to get used to her, but fortunately we had enough time for her to fall in love with her sister before she died. Elijah, just 17 months old at the time, didn't seem to even notice there was a new baby in the room! She met cousins, aunts, uncles, grandparents, friends - that first day was busy! Charlotte was so quiet and still, we were sure she wouldn't last as long as Benedict. Having been through this before we knew what to expect, and we were very anxious for none of our visitors to see Charlotte having a seizure. We were quite tense while people were there, so it was nice when evening came and we had her all to ourselves.

We had so many times over the six days when we thought she was going to die, the first was about 11pm the first night - there was no way (we were sure) she would get 2 dates to her name.  We were so wrong! There were at least 3 shifts of nurses I informed, "I don't think she's going to last very long now..." Strangely enough, everytime I thought she was dying I was able to appreciate how long we'd had her for. So I think that had she died that first day, I would have thought she was amazing and been grateful for the time we had with her - no matter how long. I never felt like begging her not to die yet, I just felt glad for what we'd had. She was so lovely and pink, and sweeter than anything I've ever beheld. She was quiet and peaceful, and seemed so much smaller and more fragile than Benedict. Imagine our surprise when she weighed 6lb 9oz, a whole pound heavier than Benedict!

At the end of the second day we realised that we had spent the entire day basically waiting for her to die. We decided this was a bad way to be, and made a conscious effort to enjoy her life - rather than just wait and anticipate her death. We desperately needed some sleep, and so my mother and sister came and sat with Charlotte for 6 hours on the second night, and Mark and I were able to rest. We were really hesitant about this.  We didn't want anyone but the two of us with her when she died. On the other hand we had to get some sleep, and we gave them instructions to wake us if anything happened. It was such a relief to know we could sleep and she wouldn't slip away with no one noticing.

Maggie was able to come back in on the second and third days and spend a few hours with Charlotte. I think it was really nice for her. She got to connect with Charlotte as a real person, not just as an idea. She gave Charlotte the cutest little teddy, just the right size for her. We wrapped her arm around it and she basically held it for the rest of her life. It was so cute!

Charlotte reacted to her surroundings much more than Benedict did. Perhaps her brain was able to re-map to a certain extent? Although we have no way of knowing how much higher brain function she had, she definitely had some degree of awareness. Charlotte reacted to the camera flash, she tracked light with her eyes, she startled at a loud noise, she had ticklish hands and feet, she clearly felt pain when the dressing on her head was moved and was obviously more peaceful and comfortable after we had redone her dressing. SHE GOT HUNGRY!  It took me a while to realise she was hungry, I didn't even consider the possibility of actually breast feeding her! Several times she was fretting and making little crying noises and we didn't know what to do. Then she started to make this loud smacking noise, from sucking her tongue against her palate and I thought, 'Maybe she can suck???' When I tried to feed Charlotte she opened her mouth into exactly the right shape, she sucked and lapped the milk which I expressed into her mouth. She didn't actually latch on, but it was so beautiful to have her sucking and swallowing and enjoying real milk. As I hadn't yet weaned Elijah, I had enough milk to easily express into her mouth. I'm so glad I didn't wean him! When I would feed her she'd drink for up to an hour and then be peaceful and content again. This was my fifth baby, why did it take me so long to think of feeding her??? A healthy newborn cries, you feed her. My sick baby cries and I think 'that's cute'! I'm so glad we videoed her feeding. What a precious piece of footage!

Because she lived for so long, we were able to observe her face changing (as with all newborns). Her nose seemed slightly flattened when she was born. But over the first 24hrs or so her nose straightened out and turned into the same nose our other children have - Mark's!!! She was born with my dint in her chin, but after a few days she developed a very defiant chin, which is a Streckfuss characteristic. She would stick her chin out and pout her lips in the most adorable way! We took lots of photos of this, it was so cute! She got a little jaundiced on day three, but she had the sweetest rosy cheeks. Her ears were perfectly formed, Benedict's had been a little flattened at the top. Charlotte had lots of black hair at the back of her head, Benedict's had been light brown. But the biggest difference between them was that she could breastfeed!

Every day we'd have a moment when we'd think, 'This is it...'. We held an oxygen tube in front of Charlotte's face from the 2nd morning onwards. It didn't keep her alive (ie it wasn't life support) but I do think it kept her comfortable and helped her to pick up again after having a seizure. Then we got to day 4 (Thursday) and they started to talk about us going home. Wow! We had never even hoped for that! We had to try to get hold of a car seat, contact hospice services etc.  When it came time for us to go we were afraid to leave the oxygen - 'What if she just dies in the car without it???'  We asked one of the very kind nurses if there was a portable oxygen tank we could hire for the car, as Mark had already arranged with Hospice services to have oxygen at home. When the nurse came back she said that we were going to get a lift in an ambulance! So on Friday afternoon, Charlotte and I had a very bumpy ride home, the first ambulance trip for both of us! I was so afraid she'd die on the way home, but she made it and we had one beautiful night with her at home before she died.

When she died on Saturday, at home, it was with both of us there, holding her, loving her, and actually letting her go. After 6 wonderful, eventful days surrounded by our love and prayers, and those of our friends, family and thousands of strangers across the world, she left our arms for heaven. The impression she left on us will last forever.

About 30 min after Charlotte died, the domiciliary midwife arrived. She was coming to check on me and my stitches, but we were very thankful she was there to give us comfort and guidance at that time. She checked Charlotte's heart with her stethoscope to confirm that it had actually stopped. She slipped away so peacefully in the end that we couldn't actually pin point the exact moment of death ourselves. The midwife also waited while Mark rang the doctor to notify him. She was kind and comforting and I am sure her appearance on our doorstep at that time was an act of God. She told us that when a baby dies in hospital the family can keep the baby in the room with them for 2 or 3 days, so she suggested that if we wanted to have the funeral on Tuesday we might be able to keep her body at home with us until then. Mark rang our funeral director and he said that would be OK. So Charlotte remained at home with us until the funeral director picked her up (in her coffin) on Tuesday morning and brought her to the church for the funeral.

After the midwife left, Mark said, "It's the 26th - Benedict's anniversary." This hadn't even occurred to me. I'd remembered it was his birthday the day before, and I'd hoped she wouldn't die on his birthday, but when we knew she was dying that morning I never thought of the date. That has to be either the biggest coincidence in the world, or else it must mean something!!!  So now they both share the same 'heaven day'.

So, we had plenty of time with Charlotte after she died. We all had lots more holds. Mark and I slept with her between us on Saturday night. On Sunday morning Cecilia and Sebastian and I bathed her, while Mark videoed. They enjoyed washing her little hands and toes etc. And after we dried her, they wanted to put powder on her and enjoyed rubbing it on her tummy. Cecilia put her fresh nappy on, and helped me dress her in a tiny little white broidery anglaise dress. Some family and friends were able to visit again. It was nice to be able to pick her up and cuddle her without worrying about hurting her. After having this much time with her after she died, it was much less painful to let her go in the end. Cecilia and I dressed her in a cute and cosy outfit, and we wrapped her in the blanket I'd made for her burial. We all had last holds, and the kids gave her ten thousand last kisses each. My father had once again made the coffin. It was similar to Benedict's, but had some more 'decorative touches' - it was 'prettier' - which seemed fitting for our little girl.  I placed her in the coffin, and when it was time, I closed the lid myself.

The funeral was a beautiful celebration of her life. We did it mostly the same as Benedict's, same hymns, nearly all the same readings, we had almost all of Charlotte's cousins bring up the gifts in the offertory procession as well as some symbols of Charlotte's life (her baptism candle, a photo, a teddy, several gifts she'd been given, individual irises...) There are a lot of cousins, it was a really sweet procession. Fr Anthony was wonderful, he ended his sermon by thanking Charlotte for the privilege of holding her.

Our funeral director (who is a real old sweety) said he "wasn't at his best" that day and we thought maybe he was unwell, but he went on to explain, "I've got no daughters-in-law, and no grandchildren, and I love kids, and something like this just really gets to me..."  It must be such a hard job to do.

After the graveside prayers we sang Salve Regina again which we had sung in the hospital after completing the baptism ceremony. Each of us placed an iris in the grave, and then we gave out 55 lavender, pink and white helium balloons which we released in unison (except for a few whose little holders were hesitant to let go!!!) It was such a happy and positive way to end the service! We really wanted to end with an uplifting note, because to us Charlotte's life was a triumph - not a tragedy.

So, side by side our babies lie. Charlotte, Benedict and then their cousin Thomas Walter all in a row. The last two babies buried at this cemetery were both ours. It IS sad, but there has been so much good, so much happiness, so many blessings mixed in with all the heartbreak that I can't say it's a tragedy. I am sad they couldn't stay, but I am so terribly happy that they came at all. We have certainly experienced that peace which passes all understanding during this time. To have known and loved them both is such a precious gift that we will hold in our hearts forever.

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.