Mom to Marin Louise

Born and Died March 2nd, 2011

Sydney, Australia

I conceived my daughter whilst on holidays where her father lives and works as a fisherman. I went there for a week to escape the world and process the heartbreaking things I had seen whilst on deployment in Asia with a humanitarian mission.

A day that will forever remain with me, and has become all the more important to me now since my daughter’s birth and death, was when I was on a tiny island in Indonesia, in the Spice Islands. A crowd was gathering around a woman and she was holding her child. She had laid a sarong over her child’s head. When she turned the cloth fell and exposed her child’s head: a ‘normal’ sized face with the head so very large it matched the size of a basketball. I asked the doctor’s what was wrong with that child, whose body looked to be about 3 months old, he explained hydrocephalus and I asked about the prognosis for the child. It wasn’t good; her Mother was just waiting for her to die. I felt haunted by the look in the mother’s eye. She came back to our clinic every single day for five days trying to seek answers and medical help, but we didn’t have the equipment. I struggled with the knowledge that if that child had been born in Australia, medical intervention could have saved her life. That experience, and so many others were the reason I needed time off.

So I rested and relaxed on my break and met M. A month or so after I returned home I found myself pregnant, single and looking forward to the future. I was ashamed of how my baby was conceived, I was scared about the future but I became focused: every single decision I made from the moment I saw that second line on the pee kit was for my baby. My parents and friends were wonderfully supportive and even my child’s father, M came to be a friend and a willing participant in the process, and together we were excited about our future.

I had such a great pregnancy. I was tired during the first trimester and bouncy during  the second. I had no morning sickness. I just had to contend with restless legs and heartburn occasionally. I had the glow. At 5ft 1” I was scared about how immobile I would get later in pregnancy and whether I would be able to have the intervention and drug free birth I was working towards. I was on track, my baby was on track: strong heartbeats, good weight gain, I was taking my vitamins and had done since I found I was pregnant at the start of week 7.

Although, I couldn’t shake this funny feeling I had. I would talk to my Mum about how I was feeling disconnected, I just couldn’t voice my excitement to anyone. I didn’t announce it on facebook. I was scared something would go wrong and I would get hurt. I had not bought one thing. I wanted to wait. I thought it was because I was embarrassed that I was a single mum. I tried to put it to one side and focus on my plans and the little creature growing every single day in my belly.

I booked into my morphology scan at 20 weeks, invited my four best girlfriends to come along. We had lunch, went to the scan. It took forever, the sonographer took all the key body parts, told me I was having a girl and then kept focusing on the head.

She excused herself to talk to the doctor. I didn’t think anything was wrong. The five of us talked about what sport she would do after school, how I would warn her about boys and then we planned that she would marry my best friend’s son (he is three). The sonographer told me I needed to come back the next day. She assured me it would just be a five minute appointment and that she just missed some head pictures. I was reassured. My beautiful baby girl was healthy and I would get to see her again the next day, I felt lucky. I had a really good nights sleep.

I woke unsettled. Why was I going back, this didn’t seem right? She couldn’t get pictures of the head? It was right there. I thought about asking my housemate to come, but dismissed my thought as dramatic. My feeling was confirmed when the Sonographer advised me they suspected my little girl had Spina Bifida. As the ultrasound progressed I was informed that my daughters head was not the ‘normal shape’ and there were indications of extensive fluid on the brain. They spent an hour searching for an indication of SB, and they found it: an open hole in the sacral region.

I went to see my obstetrician. He recommended a genetic counsellor because he didn’t feel he was informed enough regarding the extent of the hydrocephalus and as to what my daughter’s quality of life could be. I was advised of the legalities of medical termination if that was my choice.

I went into the next appointment with an open mind: my baby wasn’t perfect, but that was okay I could handle whatever was thrown my way. Yes, being a single mum with a healthy baby would be hard, and with a disabled child would be even harder, but I could do it: I am a strong, independent woman. As the genetic counsellor spoke my heart broke, it wasn’t a matter of whether she would need walking aids versus a wheelchair. My little girl would suffer both physical and mental disabilities with the very likely possibility of having no cognitive function; she would require numerous operations and be prone to infection and may never be able to do anything for herself.

I walked out of that office, and I felt my decision had been made for me. There was no decision. I had to say goodbye to my daughter.

It was a Friday. I booked in for the induction on Tuesday. It was my last weekend with my little girl inside my belly. On Friday night, with my two best girlfriends, their sons and my mum I felt her kick for the very first time. I cannot begin to describe the absolute devastation I felt. I sobbed. The girls cried. My mum cried. I was angry with her, why did she have to do that then, I thought. As the weekend progressed and she continued to kick, it was a rollercoaster of emotion. Was she trying to tell me I was making the wrong decision? Was she trying to tell me that I was doing the right thing? Was she trying to tell me that she loves me? As I lay on my bed on the Tuesday morning I felt her move for the very last time, as a tiny little bubble in my belly. I realized that it was her way of providing an ever-lasting connection with her Mummy, and I will always have that moment. She wasn’t just a black and white creature on the ultrasound screen anymore and no longer was she the artist impression on my iphone pregnancy app, she was my baby and I had to say goodbye.

I arrived at the labour ward and began the procedure. It started at 10am and I can’t remember when I began to feel the pain, but aided with pain relief I was able to read magazines, rub my belly and curse the world. I went to sleep for three hours and woke at 1am and the pain was unbearable. My mum sat beside me, texting progress reports to my Dad and friends. She rubbed my back when I asked. When the contractions came I used my breath, there was no point in crying or screaming or being dramatic it wasn’t going to change the outcome: my baby was going to be born asleep, with a hole in her back and fluid on her brain. I wanted her to be born in peace and I worked so very hard at achieving that for her. I cried. I wanted it to be over; her pain and my pain were connected.

And then at 0915 on 2 March 2011 she was born: my most amazing little creature. Her fingers and toes were tiny and she had full lips and a wide nose like her Daddy.

I named her Marin Louise. Marin is Latin meaning ‘of the sea’. As I am in the Navy and her Daddy is a fisherman I wanted to reflect that in her name, I feel very connected to the ocean and water, and now I always will. Her middle name is in honor of my younger sister, she died at 12 hours from Hyperplastic left heart syndrome as a result of my Dads balanced chromosomal translocation.

I spent the day and night with her telling her everything I had wanted for the both of us. I told her that I loved her. I held her and it felt so cruel, for the fourteen weeks I had known I was pregnant all I had wanted was to be a good Mum and as I sat there holding my baby I felt like I was anything but. I kissed her goodnight, the first and last time I would ever do that to my darling daughter. In the days after the sorrow and guilt was unbearable, it is still constant now, and I imagine will be for a very long time.

I am functioning. I am sleeping okay. I am eating. I am laughing. I am crying. I am heart-broken. I am annoyed. I am lonely. I am grateful, so very grateful.

I am grateful that I am reminded of her whenever I see the sea.

I am grateful for my Mum. The experience of child loss is not, as she says, a bond you want to share with your daughter. But we do.

I am grateful that I have my friends and family who have been my support through all this.

I am grateful that I have inner strength.

I am grateful that I have begun my journey on the road to inner peace.

I am grateful for the bad days because they make the good days so much better.

I am grateful for the opportunity to be a Mother.

I am grateful I am Marin’s Mum.

I am grateful that I am healing.

I am grateful I suffer the agony of my heartbreak every single day so that my daughter didn’t have to.

I am grateful no other decision or experience during the rest of my life will be as tragic and heart-breaking as this one has been.

I am grateful that, unlike the Mother in Indonesia I saw last year I had the option of medical intervention to prevent the suffering of my child.

I am grateful that I have accepted this wasn’t my fault.

Kara blogs at http://mypromisetomarin.blogspot.com/

You can contact her at mypromisetomarin@gmail.com

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  1. Kara your story was beautiful and heartbreaking. I cried the whole way through. You are a wonderful mother and a beautiful person.

  2. Maggie Tate says:

    Praying for your continued healing. It is never easy… I am sorry you had to suffer through the loss of your daughter, as I did. I am glad you were able to hold her and talk to her for a while- it helped me to hold my daughter and talk to her after she’d passed. I wouldn’t trade that bonding time with her, ever. Marin is blessed you are her mother.

  3. Kara, I am so heartbroken for you. I can feel the immense love you have for Marin in your writing. She was blessed to have such a wonderful mommy. Hugs to you.

  4. Amber, you are not just rude; you are heartless scum. This mother’s heart is broken, she writes this big thing about the anguish she felt while holding her daughter, and your response is to criticize her while rubbing in the fact that both you and your cousin have a healthy babies while her baby is dead? Was it really necessary to post that? I hope someone deletes your post before it hurts anyone.

  5. Thank you ladies, it is such a privilege to be able to tell my story AND to have people read it! I think (thankfully) I must have missed some drama because the post you are referring to Gina has gone. Thank you for sticking up for me, you are a kind woman.

  6. I am so sorry for your loss! Your strength is amazing. Since losing my daughter, Stella, I’ve had a lot of people tell me how strong I am. I get so angry because I do not feel strong. I look at people like you and I think YOU are the definition of strong. Lots of hugs!

  7. I terminated 2 years ago due to a spina bifida diagnosis as well, so reading this was eerily familiar. I’m so sorry for the loss of your sweet girl. I love her name. It is such a heavy load to carry, choosing to suffer instead of your baby, but it does get easier with time. Lots of love and light to you!

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