If you know me in real life and have found this blog, please honour my wishes and don't read on. I need this place to freely write my feelings to help me to heal and if you're reading, I'll censor myself. I have no way of knowing who is reading so all I can do is trust you to honour my wishes. Thank you.

(this doesn't apply to any of my fellow mums of angels I've been lucky enough to meet in real life)

Sunday, February 28, 2010

My Pregnancy with Matilda

Here's the story of my pregnancy - warning - it's very long.

DH and I got married in February and started trying for a baby straight away. We conceived the first month and being 28 and 29 and healthy, I thought our biggest risk was miscarriage. We were very cautious about telling people - only telling our parents and a couple of close friends before the 12 week scan.

I had mild morning sickness (never had a day off work) and everything seemed to be going fine. The week before the 12 week scan we saw our ob for the first time and she did a scan for us of the baby - it was the first time we got to see our little girl and it suddenly all seemed much more real. That night I raised with DH that maybe we should discuss what we'd do if the 12 week scan results were bad - he got upset and said I couldn't believe I was bringing this up on the best day of his life. So I apologised and dropped it - I still didn't really think there was a possibility of anything going wrong at this stage.

We started telling people over the next couple of weeks and everyone was very excited - while I was still cautious it was starting to seem more real. And I couldn't wait to get a baby bump.

I was a bit nervous before the 20 week scan but looking forward to it more than anything - I though I'd feel much better once it was over. We'd decided we wanted the sex to be a surprise. My Mum and Dad were staying at the time so DH, Mum, and I all went to the scan. I was lying there holding DH's hand looking at our baby on the screen as the sonographer measured everything. Halfway through the scan he asked when my next ob's appointment was and I told him in three weeks - I remember thinking 'I wonder why he's asking that' but didn't really think anything of it. Then he asked where we were planning on delivering and I told him where - similar to the ob appointment, I didn't really think anything of it. I had no idea at this stage, my world was about to change forever. He said 'the babies growing fine' and in the moment before he started talking again I thought 'great'. Then he said 'I'll just show you something' and focused on the baby's adobmen - the baby had an omphalocele. Part of her small bowel was outside her body in a sac. I burst into tears as he started explaining that it would need surgery to fix after the baby was born. And then went to say that omphalocele's are associated with Down's syndrome so even though our nuchal result was good we should probably consider an amino to rule this out so we should see our OB much sooner and get a referral for this. We left the scan with me in tears and walked down to our OB's office to get a new appt. This was Friday afternoon and we were given an appt for Tuesday morning.

Arriving home I googled omphalocele's and saw the incidence was 1 in 5000 which terrified me but at this stage I still really didn't think there was much chance of our baby having ds because of our nuchal results. I stayed off google after this point because it was scaring me. We'd planned to go to away for the weekend with Mum and Dad and still went - I was worried all weekend but more because our baby would need surgery than anything else.

On Tuesday we as we waited to see our OB, me and DH were laughing at something in a magazine and the receptionist commented that it was good to see us laughing again. When we got into her office, she didn't know how high the association was between omphalocele's and ds so rang the fetal unit to talk to a specialist to find out. When she got off the phone, she told us the association was 'very high' so I asked what that meant and she replied 'over 50%' - I burst into tears and my world fell apart for the first time. We went home to await a phone call from the fetal unit with an appointment for an amino. We had the amino Wednesday morning and one thing the specialist said that the omphalocele was going to be fairly easily fixable in a non-ds baby but the outcomes for a ds baby would be more uncertain because they don't tolerate surgery so well. I was an absolute mess over these couple of days and completely disconnected from the baby - wearing baggy clothes and not touching my bump. The specialist also told us that there was a 75% our baby has ds regardless of our nuchal result. My DH was more hopeful that me at this stage - I was pretty much convinced we were going to have to face an awful decision. At the time, like now, I couldn't believe it was happening to us.

On Thursday at 1pm, the receptionist rang and asked if we'd heard from the fetal unit yet and I said no so she got my ob and she told us 'The results are good'. I couldn't even take it in - I replied 'you mean the baby doesn't have downs' and she said 'no it doesn't'. My DH yelled with excitement and she asked if I wanted to know the sex and I said yes and I found out we were expecting a girl. It took a couple of days to sink in but then I started to get excited again. Due to the omphacele we were to have additional scans throughout the pregnancy and the next one wasn't until 24 weeks.

At the 24 week scan we found out there was extra fluid around the omphalocele and they weren't sure why. It had a narrow base so it may have been due to some constriction in the blood supply to the bowel in the omphalocele which could mean part of the bowel wouldn't be viable. Again I left the scan in tears. But it was a case of waiting and seeing until the baby was born - there was only so much they could tell from the scans. At this stage I was starting to find it difficult around some friends who would go on about how excited I must be etc etc. And people wanted to buy things for the baby. I just used to change the subject or say we didn't really need anything.

Then I had my first glucose tolerance test. At the next appointment with my ob, I found out I'd failed that but that wasn't major because gestational diabetes can be controlled but again it was something I didn't actually think I'd have to deal with because I didn't have any of the risk factors. Then I got onto the table so she could listen to Matilda's heart and she took one feel on my stomach and said there was extra fluid in there. Never having been pregnant before I didn't realise I was bigger than you'd expect for 27 weeks but had noticed a sudden increase in size which I'd just put down to the baby having a growth spurt. So she said there could be something wrong with the baby and had me bring my next scan forward. I left in tears again - it just seemed to be one thing after another at this point.

I did my second glucose tolerance test on Friday morning and went to my sister in laws wedding that weekend. I did a lot of telling people the pregnancy was going fine that weekend which wasn't really the case - I just didn't feel like going into it with everyone. It was good though because we were busy and it took my mind off the scan on Monday.

On Monday we had the next scan (28 weeks) and found out the baby had large kidneys, liver, and protuding tongue which indicated the baby had Beckwith-Wiedemann Syndrome which obviously we'd never heard of (it has an occurence of 1 in 14,000). They explained that BWS babies have an increased risk of childhood cancers but I was struggling to take anything in at this point and couldn't really think of any questions to ask. They printed out a couple of explanations for us to read while we waited for the scan report. But they also said once BWS kids are 7 or 8 the manifestations of the syndrome are gone, their cancer risk is back to normal, and they generally go onto live normal lives which reassured me. BWS is also associated with pre-eclampsia so I needed to be monitored weekly by my ob at this point.

After getting home at reading more about BWS on the net, I got my head around it was actually started feeling quite positive about things. Yes there were going to be challenges but the things were generally fixable and we were aware of the syndrome and the baby was going to be delivered with specialists on hand to address any expected issues. I spoke to my Mum a lot about it as well and she said after initially being upset and shocked she also felt like this. DH was also positive that while it was going to be more complex and she would have to spend some time in intensive care and see doctors throughout her childhood that things would be OK. I joined a BWS forum and received lots of positive messages from people that BWS really isn't that bad and their kids are regular kids and often the manifestations of BWS are mild (they are extremely variable). I only told close friends and family about the BWS because it really was a case of waiting and seeing how things were when the baby was born and I really didn't feel like answering a lot of questions about it all the time.

About this time we also spoke to the neonatologist, had a cardio scan of the baby (BWS is occasionally associated with heart defects), and saw a social worker. All this went well. Scans became weekly around this point so it was really one appointment after another. I was also diagnosed with gest diabetes around this point so saw an endrochronologist and went on the diabetes diet - this didn't seem like much of an issue and actually felt like something I could control.

At 29 weeks my bp was up and I was showing protein in my urine so I was admitted to hospital for the first time with my ob talking about delivering the baby in the next couple of days. Luckily once I was admitted the PE calmed down. Everyone was calling me and saying that I must be finding it awful to be in hospital, wasn't I bored etc. But I was actually a lot calmer in there and I'm glad I spent the last four and a half weeks of my pregnancy there because it gave me time to think about things, spend some time on my own, talk to the baby etc. I also felt better having her heartbeat checked regularly by the midwives. After 10 days things looked stable so I was discharged on a Friday but on Wednesday the following week was readmitted. I was quite anxious that weekend at home.

So we were just taking it one day at a time and as time went on I started to feel more confident - we were approaching 34 weeks which everyone said is good for premmie, one of the midwives had a 8 year old grandson with BWS, the scans were showing the baby growing well and with good flows, and I was feeling her move regularly. I was enjoying the pregnancy as well at this stage and very excited to be getting stretch marks - when I was first admitted at 29 weeks I didn't have any so I was excited to be getting bigger.

On Thursday the 29th the baby suddenly stared moving a lot less but we had our daily CTG which was flatter than usual (they were always flatter than the midwives thought was normal but they were normal for Matilda and our ob wasn't worried because the weekly scans were still showing good flows) but I wasn't too worried at this stage because she'd had the occasional quiet day before. Then on Friday she was still quiet and I was getting quite worried - the CTG was pretty flat again and faxed through to another ob (it was my regular ob's weekend off) but we hadn't heard back from her. At 7.30 the midwife came round I said I was worried and started crying so she rang the ob, put the CTG on, it was totally flat but regular (no decels). The ob arrived and said we were delivering the baby that night. I was excited and scared. Our neighbour drove DH in, his sister came, and I rang my Mum and told her to get on a plane the next day (her bags had been packed since 29 weeks). Matilda was 34 weeks exactly. I was wheeled off to theature at 11.10pm and Matilda was delivered at 11.44pm on the 30th of October. As expected, she was taken off to the resus room where the neonatologists were waiting for her. Mick saw a glimpse of her and I didn't see her at all at this point. We were so glad she was finally here and it all seemed very surreal to me at the time.

Writing this down makes it look like my pregnancy was awful but apart from the awful week at 20 weeks generally I'd be upset after each setback for a day or so and then adjust to it and start feeling more positive. Having said that I never wanted people to buy us things - I actually asked my DH to tell my MIL this because people kept wanting too and it made me quite anxious. I enjoyed being pregnant and loved my growing body and feeling the baby move. My DH used to hold onto my belly each morning until he felt Matilda move before getting out of bed. We used to joke that Matilda obviously thought one doctor was not enough because we'd seen so many different people and had so many scans.


  1. Thank you for sharing this part of your and Matilda's story. As often as you need to remember, I'd love to listen.

    Hope you find some solace today.

  2. Thank you for sharing Maddie. Thinking of you.

  3. Oh Maddie. I'm crying. It's just so sad. I was reading this hoping that somehow everything would turn out alright for you and Matilda. Even though I know how this story ends.
    The first part of our stories is so similar. My husband and I were also 28 and 29, fell pregnant quickly and I honestly didn't believe that anything could go wrong. Then after the 20 week scan everything just fell apart.
    I'm so sorry Maddie. Thank you for sharing your memories of your pregnancy with Matilda. I'm glad that you kept your positivity and enjoyed the time you spent with your baby girl. x

  4. I wish there was a different ending as well Catherine. It just seems so unfair that we went through all of that for this to happen. I didn't care she had a syndrome and was just happy we live in the city near the big children's hospital.

  5. I completely understand what you mean about feeling hopeful after each setback. We felt the same way, much of the time. Another bleeding episode, while upsetting (sometimes greatly so), would pass, Gabe would be still be fine in there, and so I'd relax a bit. It became normal, and I grew accustomed to our new state.

    Thank you for writing it all out. I'm glad, despite all the issues that continually cropped up, you have some good memories of your time with Matilda in utero.