Tuesday, January 17, 2012

Walking With You - First Steps...

A couple of weeks ago, while looking on some of my favourite blogs, I found a link to Sufficient Grace Ministries. They are doing a little sharing series for the next couple of months entitled 'Walking With You' - a time where babyloss mama bloggers can share parts of their journeys, as well as encouraging and praying for other mums on their grief journeys also. A few of the babyloss mamas I know are participating too. And seeing as though I actually haven't had the chance to write down many of my stories yet (diagnosis, birth story, funeral), I figured this would be the perfect opportunity.

I have missed last week's post as I was away camping with my family, but I am going to share that one now -seeing as its the beginning, and hope to get my 2nd story done this week too.

The First Steps - Diagnosis - 'Incompatible with Life'...

It was a Wednesday morning. The date, the 18th of May 2011. I had just had my 29th birthday a few days before and enjoyed celebrating over a dinner party with friends on the weekend before. Little did I know that week my world would change.

We were very excited to go in for our routine morphology ultrasound. I was 19 weeks.

We chose not to have the 12 week scan or blood tests, and so this was to be the first time we would see our beautiful little baby. We were very excited to see him/her and hopefully find out if it was a boy or a girl.

With two sons and a daughter already, we were very much hoping that #4 would be another girl. The worst case scenario played out in my mind for this day, would be that it was in fact a boy. Well, boy, were we wrong about that one.

I remember sitting in the waiting room, bladder over full. I needed to let some out, good goly! We didn't have to wait very long for the sonographer to call us in. A great start!

As she put the cold gel onto my belly and began to run the wand over my bump, we could see our little one moving around inside me. Hello in there little baby!

She looked over baby's body briefly then brought the head into focus. As I looked at the top of baby's head, I couldn't help but notice there were a lot of dark patches in the brain. But I didn't think too much of it. It had been 4.5 years since I saw Lani on that scan, and so I couldn't really remember if a brain was supposed to look like that or not, and so I didn't think too much of it.

She lingered on that brain for a long time. I studied the sonographer's face from time to time. She looked worried I thought? She left the room for a bit and I asked Greg if he thought she looked concerned? He said no, she was just concentrating. I wasn't so sure.

She was still in training, or fairly new and so she came back with another senior sonographer who took over. She started pointing out the different body parts to us. Here's baby's spine, here's baby's legs and arms etc etc. Then she looked over the brain too. And kept looking. Taking measurements. Looking some more. This was when I started to feel that maybe something was not right. Then she brought up baby's heart and she started taking more measurements, more looking, more clicking, more measurements, more looking. She looked at baby's hands and feet again, and I noticed that the hands looked a little bent backwards. I could only see one hand, but I could see that much. I wondered if it was just the way baby was holding it's hand or what?

It seemed like it was going on forever. So Greg asked her 'Is everything OK?' And she said 'It looks like there's something wrong with this pregnancy.'

What? What? How? What? I have 3 perfectly healthy babies, have had three perfect pregnancies and births. What could she mean?

I think she said it might be something chromosomal, but she couldn't say anything more and had to get a 'doctor' to come in and check over baby and to talk to us some more.

It seemed like ages that we sat in that room by ourselves. Quiet, dark, eery.

On the screen were baby's measurements, listed with average gestations for each measurement.
11 weeks, 17 weeks, 13 weeks, 16 weeks, 11 weeks. They were all over the place.

Greg and I were speechless for a while, completely in shock. I think we just looked at each other and squeezed our hands tightly. I think we asked what on earth they could be talking about? Will our baby be alright? We didn't even know if it was a girl or a boy...

When the doctor came back in, she had a good look over baby (again!). The silence was deathly, except for the clicking of keys. She said that it looked like it was something chromosomal. Maybe a trisomy. Trisomy 18 or Trisomy 13. What were these names? She said she would send her report up to Maternal Fetal Medicine and we would be able to go up there and chat to a consultant who could tell us more. She asked us if we would like to go and get some lunch, and we obliged.

I think it was the first time I allowed myself to actually spill tears. This was crazy. This didn't happen to me, not even to anyone I knew? Why God, why?

As we knew nothing about Trisomy 18 or 13, we assumed that it meant we would have a baby with a lifelong disability. Something like Downs Syndrome maybe. How on earth could I do that?

We were petrified. I don't think I even tasted the food I ate. I stared out the window at the birds, at the other people sitting eating their lunches, wondering if they knew that my world had just come crashing down. We talked a little. Mostly about how on earth could we do this? How could we parent a child with a disability?

When we finally went back up to Maternal Fetal Medicine, we met with a most wonderful woman. Dr Portmann was her name. When she spoke about our baby, she called it 'baby'. She acknowledged our little one and it meant the world to me that it wasn't just 'a feotus' or embryo or something. It was 'baby'.

She said she had looked over the report and although she couldn't confirm without me having an amniocentesis, she said she 'would be very surprised if it wasn't Trisomy 18'. She went through what a lot of the indicators were, and we had seen them too. Fluid on the brain. Clubbed hands and feet. We could see those on the scan. One side of the heart was bigger than the other. Small jaw. We had seen them all. There was no doubting that she was right.

Then she said "I'm sorry but Trisomy 18 is incompatible with life." The wind flew out of me in a gust. To be honest, when I look back, I think my first instinct was of relief. That I would have a child with a life-long disability. But that was only first instinct. Then it set in. My baby is going to die. She went on to tell us that 50% of babies with Trisomy 18 will die inutero. And that most others will die within minutes or hours of birth.

Wow. Our baby was going to die. Our baby very possibly had a condition called Trisomy 18. How did this happen?

She then told us a little about the condition. A random occurrence at conception.

She asked if I wanted to have the amniocentesis to confirm and I decided I would. I knew I couldn't do it the following day as Eli had his first Sports Day at school and I wanted to be there, so we scheduled it for the Friday morning.

She gave us a quick rundown of our options, but we said fairly up front that we would probably be continuing with the pregnancy. And I am so thankful that she never pushed it. I think I might be the only person in the history of the world who wasn't 'recommended' termination, and for that I feel very blessed. She said they don't try to persuade parents either way. (yet most seem to?)

I will admit that termination did enter our minds, even if momentarily. Human instinct maybe? To protect ourselves? I don't think I could have ever gone through with it anyway. And we fairly quickly decided that no, that option was not for us and we would carry baby for as long as God allowed us to.

We left the consultation and headed to the car. I think we sat numb for most of the car trip. We talked a little about how could this happen to us? What were we going to do? How on earth would we tell the kids? We don't even know the gender!

We had to pick Lani up from kindy, and thankfully we were a little early, so we didn't have to face any of the other parents. A couple of my friends who were kindy and prep mums knew our scan was that day so would have wanted to hear all about it. I couldn't bare to face anyone that day. I sat in the car and Greg went in to get Lani. Then we drove to school and sat in the car park until a little after 3pm so that we wouldn't have to talk to anyone there either. Again I sent Greg in. One of my close friends Karen saw Greg and said Hi, but she later told us that it looked like something was wrong so she didn't ask about the scan. Good thing she didn't. I don't know how we would have reacted that day.

We were in complete and utter shock. In the space of a few hours, our world had turned completely upside down. We had gone into a scan with the worst case scenario of a boy... and come out with one much much worse. Our baby was going to die. My precious baby. The one we had actually 'tried' for. The one that took me about 6 months to convince husband to want! The one we'd tried 3 months for (normally we fall pregnant straight away).... how could I lose this baby that I loved and wanted so very much?

We knew in our hearts that God would never take us through something we couldn't handle. And that he would never leave or forsake us. And so I think I knew we could do this - but only with Him. And how true that turned out to be.


  1. So many tears for you, and for Greg, and for Sebastian. It's terribly tough to read, can't even imagine how tough it was to live it. Thank you for sharing your story and your sweet baby with us Natti xx

  2. oh Nat-i sit here in tears-i have no words-just tears.xx

  3. So teary here... Oh natti, crying for all you must have felt, huge hugs love! Thank you for sharing sebby with us honey, your precious bubba will always have a place in my heart. Love you xx

  4. i read this and cried, you go into that room so excited and just dont expect to be told this, love to you seb and your family

  5. I can't imagine this. Knowing your sweet baby wasn't going to make it. God is amazing how he caries us through our hardest days.

  6. I know this story well. I was there with you through it. I heard you again tell everyone about it at the funeral. But still my heart aches for you. Still I read every single word, wishing and willing it not to be true. Hoping it could have been different for you.

    Hugs my love xxx

  7. A heartbreaking story beautifully written.

  8. Oh Nat, such a beautiful yet heartbreaking story you have told here.. thinking of you often xx

  9. Nat...so glad you have joined in to share your journey with your precious baby boy. I'm glad your doctor didn't push termination as so many others do. We chose to carry our son, but we did listen to the doctors suggestion for a moment...we considered...and chose to leave the life of our son in God's hands, knowing we couldn't make the choice ourselves. I'm grateful for that time with our Thomas.

    Looking forward to reading more about your sweet Sebastian.

    Praying God's continued comfort for your family...

  10. Oh Nat, precious one... (((hug)))

    You know the professional relationship I had with Dr Portman during my years in Brisbane. When you and I first talked after your scan, I was praying so very hard that Dr Portman would be taking care of you (1 of 2 MFM specialists I would have recommended in that particular hospital). I was so relieved when I heard your response, because I knew you would be in wonderful hands, whatever your choices and outcomes were going to be.

    I am so glad you are sharing your story again. I don't know how you feel each time you share it; but thank you for just being so open about your experiences, your feelings, your thoughts and how you are going from day to day. It gives me something tangible to pray for each time, and just know that your family are in my prayers every single day.

    Sasch xxx

  11. I'm glad you are getting the chance to share more about your story. Thank you for joining in! You never imagine getting such a diagnosis-hearing that your baby won't live. You never think it'll happen to you. xo

  12. So beautifully written Nat, right from the heart. I felt like I was on the journey with you. Until our own diagnosis, I had never heard the phrase "incompatible with life". In the space of those short months, you have endured so much - being excited about being pregnant, and like any woman going to the ultrasound with the expectation of finding out the gender! It feels naive but unless it has happened to someone you nkow, you never expect to hear these sorts of things - it only happens to others and people who you don't know. Hearing the shocking news has a way of making you grow and learn in such a short time, both good and bad. It is quite a journey. Your journey is very inspiring and it has left a legacy xx

  13. Thanks Marina, yes its definitely something 'that happens to someone else' and that you live in ignorant bliss of until it happens to you or someone close to you.

  14. That was beautiful and honest! SO very encouraging to me, a newly heartbroken mommy. Thank you


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