Cordelia's Life

Cordelia Rae

Cordelia lived for 12 days. A short time. Not long enough. I wanted more time with her.

Pregnancy

Cordelia had a complicated life. Right from the beginning. At around 12 weeks things started to look a little worrying. We had results back from some tests that gave her elevated odds for Trisomy 13 and 18. I hadn't even heard of them before-didn't even know what Trisomy meant, guess I must has slept through that biology lesson.The odds were on the low end of high risk but that didn't stop me from being scared. We decided not to have an amniocentesis done as the odds of a miscarriage were too high for us. We discussed it with my doctor and agreed to have an early level 2 scan done at the hospital at around 18 weeks instead of the usual 20ish weeks. I felt good with this plan, part of me wanted to have the amnio just to be sure but I was too scared to do it.

So we carried on as best as we could until the 18 week scan. I tried not to worry too much, I searched the Internet for everything I could find relating to T13 and 18. Big mistake. 

The day of the 18 week ultrasound came. The 3 of us went together. We don't really have child care as I am a stay at home mum and because we live overseas we have no family to help. It was difficult having Wren in there with us as she wanted to get into everything and run around the room. Not so good for the ultrasound technicians. There were 2 of them that day. I remember feeling reassured that there was 2 of them, nothing would get missed. They were mostly looking for signs of T13 and T18 which can often be seen on ultrasound. Everything seemed to look OK. The baby was moving around lots- a good sign they said. Relief.

We made another appointment for 2 weeks time to follow up. I felt like things were going to be OK, so much so that the day of that follow ultrasound I told my husband who was working from home that day to stay at home with W instead of bringing her and having to wrestle with her during the appointment. I would be fine on my own.

It turns out this appointment is where I would really need him. They found a problem with the baby's intestines. My blood ran cold. I was terrified. What did this mean?. They weren't sure at this point. They wanted to get Professor T who headed the ultrasound department to look. It would take a bit of time so they asked me to wait around. I called my husband in a state to come to the hospital quickly. I was so scared. My husband arrived and I filled him in with what I could remember. The professor arrived and we went for another ultrasound so she could see. She confirmed a blockage in the intestine, a 'double-bubble' although she was not sure what part of the intestine the blockage was in. The baby would require surgery after birth  she said. This is also a common condition of babies with Downs Syndrome so with my elevated risk of other trisomy disorders things were looking a bit scary. She strongly recommended an amnio and booked us in for the next morning. Things happen quickly here in Switzerland. My heart sank, I am not sure I even fully understood what she was saying. I think I thought it was something that would go away. I was really upset, my poor baby. Surgery. Terrifying. She said we would meet with a surgical team at some point soon.

We had to go for the amnio on quite possibly the coldest day ever. It was minus crazy cold. We had to bring W with us again. Poor girl. This meant that I had to have the amnio alone as she couldn't be in the room, so Sam had to stay outside with her. I was alone and scared. I remember being quite calm about it until they started preparing me for it, like surgery almost with various dressings over me and the sterilisation of my bump. That's when I started to get really scared, wished I had Sam there with me. Lets just say the amnio was awful. A painful nightmare. It hurt like hell, I had a nurse laid over me to keep me from moving. They hoped they had got enough fluid. So did I. The next few days I just stayed at home and Sam looked after me and W. Waiting for the result was pure torture. I tried not think about them but it was impossible not to. We finally got them over the phone and all was clear. No chromosome problems. Breathe. Good news-finally.

They scheduled us for another ultrasound. This time we all came together. We walked into the room to be met by prof T and a man who turned out to be the surgeon. What? At this point I still thought this double bubble could disappear, I was being naive. He broke down the situation for us and explained where they thought the blockage was and how they would perform the surgery. I was still in shock that he was even here discussing this with us, we weren't expecting him. He said the recovery would be more difficult and long than the surgery itself.

The next ultrasound we had, Professor T found a problem with the baby's eye. She couldn't quite see in enough detail so ordered an MRI for the next day. 8th March. Wren's 2nd birthday. We went super early in the morning, thankfully my mum was visiting so Sam and I could go together and leave W at home. She was still tucked up in bed when we left, I missed her waking on her birthday morning, missed giving the first birthday kiss of the day, missed the special birthday breakfast. Sigh. I found the whole MRI experience quite traumatic. They gave me a Valium to relax the baby and me I guess. I was crying. They let Sam come in and hold my hand. It was this day we found out we were having a girl. We went home after and I put on a party for 10 toddlers and their mummas like nothing had happened.

We also met with a geneticist not long after who took out history and test results and looked into possible genetic conditions. He wrote to us saying he could not find a genetic disorder linking the eye and intestine problem but as we couldn't rule out further complications he could also not rule out a rare condition that would only be know after testing once she was born. Good and bad news we thought.

There was only about 3 weeks between this meeting and Cordelia being born. We were offered a late terminations which we turned down. During these last few weeks we had more scans and appointments but thankfully they were all uneventful. We were starting to relax a tiny but I think. I was always scared they were going to find more problems with her at the ultrasound appointments but it turns out we were in for more.

 

Birth

On the morning of April 3rd 2012 (30+5) I woke to some light bleeding, mild infrequent contractions, bad back pain as well as some bump tenderness. I called my doctor immediately and she advised to go to the hospital right away-she would tell them I was on my way. Strangely I wasn't overly scared. I had bleeding in my first pregnancy that always turned out to be nothing. I got there and was seen by a nurse first, she looked at me and the baby and thought everything looked OK but still sent me to the doctors in the delivery ward just to be sure. I waited a long time there. I was seen eventually by 2 doctors who looked my over quiet thoroughly, my bleeding had stopped too, they said I was fine to go home. Great, or so I thought. They said to come back if I had any more bleeding.

I wish I could stop the clock here. This decision to send me home was the beginning of the end. I wish I had been strong enough to say that I didn't feel quite right that I was still worried. I didn't. I was relieved to go home. I wanted everything to be OK and that is what they told me. I wanted to come home, for them to say that everything was OK. It was good news I thought. No need to worry.

We carried on as normal that day, ate dinner, put W to bed. I still wasn't feeling 100%, I had cramps and back pain, there was a tiny amount of blood when I wiped that night but I thought it was OK, I had just been at the hospital and given the all clear. How could I have not known that my dear sweet girl was in trouble?

I went to bed that night and was quite restless, I slept but it was a disturbed sleep. W woke me up crying at around 2 am, when I got up to tend to her I knew I was bleeding quite a bit and called the hospital right away, they told me to come in immediately. I called a taxi grabbed my half packed overnight bag and told my husband to stay at home with W as I didn't think it was too serious, I thought they might keep me in for monitoring or something. I didn't want to drag W out of bed in the middle of the night for nothing.

I was seen as soon as I walked in, they knew right away something was wrong, I remember a nurse being quite panicked, stern with me when I didn't take my shirt off as quickly as she wanted to me. I didn't realise that they were already prepping me for surgery. I had only been in there 5 minutes. I live in Switzerland and don't speak too much German but I didn't need to as I could tell from the panic and tones that there was a serious problem, it was quite scary not fully knowing what everyone was saying around me, they were talking to each other in German and then to me in English. Within 10 mins of me arriving at the hospital I was being wheeled into theatre for a cesarean. I had to call my husband while they were wheeling me into theatre, to tell him to come right away, he was in total shock. I had only left the house less than 30 mins before. I remember telling him to just get here. I am not sure who I handed my phone to after. They were going to give me an epidural but then they didn't have enough time so I had a general anaesthetic. My actual worst fear for delivering a baby. I had been so paranoid of that happening in my first pregnancy but oddly not really so much in this one. I remember lying on the table with a team of people around me, I was shaking so much it felt like I was convulsing. The anaesthetist was very nice. She was explaining what was going to happen, she was very calm. I remember saying that it was too early, she wasn't due for another 9 weeks. I think I was naked on the table, I remember them shaving me, it hurt a little. The anaesthetist told me to start breathing deeply, control my breathing and then nothing. Anaesthesia.

Life

I awoke a while later to find my husband and W by my side in recovery, it was early morning, almost light. A paediatrician was leaning over me telling me our baby was very poorly and may have disabilities (brain damage) from the lack of oxygen. I was so out of it still, confused. What did you say? My placenta had abrupted and the baby had been badly starved of oxygen and she was very sick. I was so confused I thought they were going to let her die. I told my husband to go see her. He came back with a picture of her on his phone for me. She looked perfect.

Cordelia Rae was born at 3.03am, weighing 1.48kg she was severely starved of oxygen and wasn't breathing for 14 minutes and lost 2/3 of her blood but they managed to revive her somehow. She she was critical they said.

Cordelia was a fighter and started defying the odds right from the get go. She looked to be making a great recovery and was dubbed the miracle baby in the neo unit. She was breathing on her own later that same day-amazing. All her organs including her brain seemed to look OK at that point.  She was even scheduled to have the intestine surgery. The next day they started to see some problems with her kidney and surgery was postponed. We were able to hold her in the afternoons for kangaroo time by day 3. She was soo tiny and precious. These times we got to hold her were so special to us. It was lovely having her in our arms, close to us. I could hear and feel her breathing, making tiny little noises, she sounded like a little kitten sometimes. Her skin was beautiful-prefect, So soft. Tiny fingers and tootsies. I will treasure these memories forever. My milk came in and was I was pumping and storing it.

Cordelia had issues with her kidneys as a result of the oxygen starvation, because her kidney function was too low she wasn't able to have the intestinal surgery she needed so she could only feed by a tube. Something that makes me sad still. We used to give her milk lollipops to suck on and moisten her little lips, she liked that.They were optimistic the kidneys would start to function soon but they were concerned as she little to no output. So we waited and tried to project positive kidney function thoughts. One of the nurses even gave her a yellow blanket to help promote urine output.

We were hopeful too, She was doing so well, we were scared but had hope that she was in fact going to be OK. How could she not be. Tragedy had never really struck us before to make us think it would harm our little girl, bad things hadn't happened to us. So we waited, loved her, sang to her, talked to her, read to her, held her when we could, pumped milk for her. Loved her some more. And waited.

Death

Sadly after 9 days Cordelia took a turn for the worse and we were told she wouldn't make it through the night. That was Friday 13th, we stayed all day at the hospital and slept there overnight, we prepared ourselves as much as you can for the death of your child. We were there for her, sang to her, read to her, talked to her, cried over her, rivers and rivers of tears. We told her all about our families-her family. Her history, who she was and where she had come from. Our history-her history. Who to look out for wherever it was she was going to.

Cordelia lived through the night. I am glad she didn't die on Friday 13th. Saturday came and went, more bedside vigils, more tears. Throughout all this we were still hopeful that she was going to be OK, I was still pumping milk for her. More and more things seemed to be going wrong though. On the morning of Monday April 16th Cordelia was very obviously beyond medical help. She started having seizures and looked to be in pain, even on morhpine. We were told that the brain damage associated with severe oxygen starvation that presents itself only after appx 10 days was there, even though her brain scans up until that point all looked good. They said she had severe brain damage and would not recover and that life support should not be continued with the other conditions she had developed (low/no kidney function, lung bleed, sepsis infection, seizures,severe oedema). The ethics committee thought life support should be stopped.

My heart broke. Pure devastation. By that point I knew it was the right decision, watching your child suffer is indescribably distressing, my baby didn't even look like my baby any more, she had awful oedema that made her unrecognisable and soo many tubes with medicine running into her that it didn't seem right anymore, the seizures she developed were happening every few minutes, her body too swollen to even 'fit'. She looked to me to be in discomfort and pain-the last thing I wanted for my daughter. There were just too many medical feats for her to overcome. My worst nightmare, my poor baby, I just didn't want her to suffer anymore. And so we made the hardest decision any parent must make.

Stop life support.

We had a non religious service for her where we talked about her journey and how much we loved her. We were then taken into the next room where Cordie was taken off the life support and into our arms where she passed away surrounded by love from mummy and daddy on the evening of April 16th. It was the worst day of my life and I am totally heartbroken that our beautiful so wanted baby passed away. I honestly thought I was going to die there and then with her but I didn't. After she had passed away a nurse took her hand and foot prints, she did it in blue ink. I wish she had used pink.

We said our last goodbye to her. Sweet dreams my beautiful girl, I will love you for always. And then we left. We left her there. My baby.

We were in total shock. Auto pilot.

We needed to go get Wren.

We got in a taxi, it was so strange to watch people going about their business as usual. Don't you know my baby just died? We had to go to our friends house to collect Wren. It was her bed time. We took her home and put her to bed-like usual-sort of. I don't think it gets much more surreal than that. To watch one daughter pass away and then collect your living daughter who is too little to understand what has happened and bring her home like 'normal'.

It was a very strange night for us. I was soo cold. We went to bed. Held each other. Darkness.