Infant Loss: {Mia’s Story}

I met Erin through my midwife, shortly after her loss, and was honored to take newborn pictures of her surviving twin daughter Isla. Erin’s story broke my heart and left me with many “why?” questions, but like so many of the mothers I have met who have experienced the tragedy of infant loss, Erin has blown me away with her strength, grace and capacity.

 

I was in the darkened perinatologist’s office, staring at the glowing flat screen in front of me.  I remember being anxious.  I was doing this 20 week scan because I was approaching a delightful little expression – “advanced maternal age”.  My husband was meeting me there but running a few minutes behind.  The first image I saw was the profile of a perfect baby.  A second later, the baby raised its hand as if to wave.  The tech stopped to take a picture.  We were chatting away by now, but my eyes were glued to the screen.  He stopped one time to ask me how many children I already have.  We continued, and he pointed things out and told me everything was looking great; little by little I was more and more relieved. The phone rang, and they were sending my husband back. Despite this being our third pregnancy, this was the first time he had joined me here, and I knew he was nervous too.  He was standing at the door when it happened:

TECH:  Hi!!!  Are you ready for twins??

JOHN:  NO!  He dramatically turned around and walked out the door. (He then turned around)  You’re totally screwing with me right?

TECH: (laughing) No, I’m serious, you are having twins

JOHN:  You’re totally kidding

TECH: No, I’m really serious (with a big smile on his face)

This went on for at least two more turns, and I was laughing hysterically the entire time, because I too, believed he was kidding.  I was just thinking, what a cool ultrasound tech we have.

Finally, I said: John, he’s kidding; there is only one baby, please come sit down.

TECH: (to me) Oh, you think I’m kidding too… no I’m serious (now I really thought he was kidding…)

TECH: No, look…
And he went to the beginning menu again, and for number of fetuses he changed it from 1 to 2 (meanwhile, I was wondering: how far is he going to go with this bit?)
Then he said: See, and there THEY are.  What a sight.  Two babies, side by side, on the screen.

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That was when the hyperventilating began.  I remember my belly going up and down so fast he had to stop the scan.  I was shaking, I was just so stunned.  I was saying one word sentences like “but I…”, “how could….” “I don’t….” etc.  I don’t even know what happened to John in those moments; I wouldn’t even have noticed if he passed out, we were just so surprised.  Once we got it together, I remember him sitting in the chair beside me, holding my hand, and saying to the tech, “Okay, tell us they’re both healthy.”  And he did.  They were perfect.

After meeting with the doctor, who said my biggest concern was preterm labor, I began researching immediately.  I learned everything I could do to have the healthiest babies possible.  I started the brewer diet, upped my fermented cod liver oil, cultured vegetables and juiced quite a bit to “fit” all the nutrients in. (I learned that the best way to prevent preterm labor is stellar nutrition). I started doing spinning babies exercises to keep them both head down, as well as seeing a chiropractor to keep me adjusted to make sure there was as much room in there as possible. I got in the water frequently, as that is supposed to help keep them in a good position as well.  I did daily herbal infusions to keep my organ systems strong to support my girls. I did energy work, to keep any anxieties at bay, meditated, and did hypnobabies – including the twin affirmations, without fail every single day. I read every book about twins I could find.  Not just twin pregnancy and delivery, but attachment parenting with twins, what it means to be a twin, different types of twins and the psychological and emotional connections between twins.  I found a midwife, with vast experience in delivering twins, willing to come from Alaska to attend my homebirth.  I did it all.  No stone unturned.  I gave them all of me.  So when it all fell apart, it was truly astounding. I had been so intensely passionate about having a very different outcome.

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When I was 36 weeks and 6 days everything was going so well. My birth tub and supplies had arrived. I was in full-on nesting mode, having finally found the perfect armoire to house their insane clothing collection. My then 4 year old had finger chained little ankle bracelets for them because we all strongly felt they were identical (they were said to have two placentas, which left this info as a question mark unless of course they were boy/girl twins). My midwife was flying in the day after next. I had my last ultrasound scheduled for the same day. That night I felt like they weren’t quite as active which was unusual because they tended to be especially lively when I was sleeping. Maybe I was just really tired and slept through it. Maybe they were running out of room. I checked their heartbeats. Both were perfect, strong and in the same range they always were. I sat down and felt a few kicks. Great! Then I got to work. I had much to do to get ready for them; I had a ton of onesies to wash. I don’t think I sat all day. The next morning I again felt something wasn’t quite right. I waited for kicks, but I was not feeling any from Mia.

I checked their heartbeats, but I couldn’t find Mia’s. I called my midwife. She gave me a few things to try, suggesting if those things didn’t work, to go to the hospital. So I tried, but her activity did not increase and I still could not find her heartbeat. I packed a bag with a few things for them, just in case they needed to be born there, along with my birth plan, and we left. I was really hoping I was crazy and they were fine, that they had simply shifted positions. It can be difficult to tell with twins.  John dropped me off, brought the girls home and called our friend and his daughter to come watch them. After what seemed like forever, I finally had an ultrasound. The tech didn’t say anything to me, and knowing that this is one of the few cases where no news is not good news, I started to panic inside.  A few minutes later a nurse came in and advised me to call my husband.  Then the doctor came in to tell me my daughter had passed and my surviving twin needed to come out immediately.  I remember calling John, but I don’t remember what I said. We hugged and cried together when he arrived. The rest of that day is a little bit of a blur. I went there in the morning, but it was dark before I got to see Isla. It felt like a time warp. There were a lot of details to go over: my birth plan, sending the placenta (singular) I wanted to keep to pathology, esmi-arguing with the neonatologist about what procedures I was not okay with… Stuff I should not have had to fight for in that moment.

I remember holding Mia first.  My doula was there with me, along with whom I can only assume is the best nurse in the entire hospital. They were so incredibly helpful in that drug-induced or maybe grief/shock-induced haze.  She was so beautiful and perfect.  6 lbs 9 oz. She stayed with me that night, and the next morning a photographer came to take photos of her for us.  The hospital staff who specifically handle infant deaths were really so supportive and did some really lovely things for us.  One of them was on vacation but came in to make a mold of Mia’s feet for me. They did their hand and foot prints side by side for me. My doula helped me call the funeral home because I could not speak when they answered the phone.  What a phone call to have to make.  Yesterday I was pregnant, and now here I am making funeral arrangements. How was this happening? I could not say the words out loud to anyone without losing it completely. I could not call anyone. I didn’t want those words to be true.

Isla was in the NICU because she had trouble breathing at first. So I stayed a few days, then was released and proceeded to camp out there, leaving the NICU only when they closed for shift changes. It was a very difficult week, compounded by me being isolated, in a hospital of all places. I dreamed of taking Isla to the beach and feeling the warm sun on our faces. I felt like we would be closer to Mia there. My husband was trying to hold down the fort at home and still get some work done. He brought our girls by once a day but that was really all he could manage. When my aunt arrived from New York a few days later, everything improved. She put my husband at ease, did the shopping, laundry, cleaning, all the while entertaining my children and somewhere in there she also managed to sit and listen to me and help alleviate my pain.  A total Godsend.

Thankfully Isla thrived on mama’s milk alone and was able to leave after the minimum 7 day stay.  I could not get out of that hospital fast enough.  And yes, taking Isla to the beach for the first time was amazing.

So many people we know and even people we didn’t were so incredibly supportive during this time – making meals, running errands. I had one dear friend who ran my business for me for awhile. I was so grateful to have this time to only focus on Isla and our family and figuring out our new normal.

I will never forget Mia’s face, and not just because I see it every day. I see her when Isla sleeps, and I imagine her when Isla plays in a mirror.  They had undiagnosed twin to twin transfusion syndrome. The placenta gives one twin too much blood, the other not enough.  Mia was getting too much, her circulatory system became overloaded, and she died.  Having to hand her off forever was absolutely gut wrenching; I wish I could go back and hold her for a few more minutes. I want to kiss her again, and smell her. But I don’t regret her. I always try to go back to those moments in the ultrasound room, where I had the funniest, biggest surprise of my life. And I smile. I focus on the gift she was. Not to mention that the time I was pregnant with these girls was just lovely, and I learned so much about myself, childbirth, twins, life and death.  In the aftermath as I tried to process the “why”, I was reminded that it wasn’t all up to me. I wanted them both here with us. I wanted them to be born at home in quiet reverence. But they may not have wanted that too. They have their own journey, their own mission. I was merely there to assist them. I wasn’t simply growing babies, but growing people, who have their own agendas hopes and dreams. I was reminded of a poem I read long ago, by Kahlil Gibran:

Your children are not your children. They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you, yet they belong not to you.
You may give them your love but not your thoughts.
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.
You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite, and He bends you with His might that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as he loves the arrow that flies, so He loves also the bow that is stable.

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So I go on, with the few happy memories that I do have. For what would have been her first Christmas together, I bought Mia a beautiful wooden angel candle holder and a package of beeswax tapered candles to light on all special days to shine for her, to let her know she is remembered.  A dear friend needle-felted me the sweetest little blonde angel for our tree.  My grandmother, who cross-stitches a foot print with the name and birthday for each of her great grandchildren, made one for both Isla and Mia in a double frame that sits on top of their once shared armoire. On their first birthday we sent a dozen flying lanterns in the sky at that ever comforting beach up to her, to let her know that she is very much on our minds and in our hearts. We also received a handmade wooden alphabet block from my brother and sister-in-law with the letter “M” on one side, and then each side was personalized for Mia – her birthday, her full name, one side said “beloved daughter, sister and twin” and one side said “always in our hearts.” It is one of my most cherished possessions. We had her name written in the sand at sunset on Christian’s Beach (carlymarieprojectheal.com) Having these little reminders and rituals helps uplift us.

They help keep Mia close.

If someone you know has lost a baby, the greatest gift you can give them is to say their child’s name. Invite them to talk and simply listen. Be comfortable to hear someone else’s grief. This kind of gesture can go such a long way for someone who is not only mourning the loss of their child, but also going through postpartum hormonal shifts that are difficult in ideal circumstances. When they are coping with the unthinkable loss of a baby, these shifts can be unbearable. Remember them months and years later.  Acknowledge their baby’s birthday and send them a little note saying something like, “remembering _____ today and always”. Or “____ is always in our hearts”. Whatever you do, if you love the parent, love their child. It doesn’t matter if you never even saw them. Keep your heart open to them. There is no timetable. If you do this, you will have a very appreciative friend for life.

Grieving a baby is an arduous position to be in, because there are fewer memories and fewer people who truly want to share them with you. Sometimes it can feel like you imagined your baby, because so few people are willing to recognize they ever existed. It is often lonely. Normal everyday life can be hard to navigate. The simple question of “how many children do you have?” can be a serious source of anxiety.

Having a supportive partner has been absolutely crucial for me. My husband and I talk about Mia – sometimes happy, sometimes sad, but we share her mutually. Sometimes we watch Isla and smile at each other knowing that we are both thinking of what it would be like if they were playing together or sharing their own special language.  She is part of us, and has bonded us in a way we weren’t before, that we couldn’t’ possibly have been before.  I remember in the beginning worrying that her loss would tear us apart, but it has really been quite the opposite.  I wish the same for all families that have experienced this kind of bereavement.  I hold a space for them in my heart always.

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 To see the beach memorial for Isla & Mia’s 1st Birthday click {HERE}

For more birth stories click {HERE}

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