Breastfeeding; Tracheostomies, Tears and Triumphs. (Part One)

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Breastfeeding with a Tracheostomy. Part One.

The story of our breastfeeding journey from birth to our first feed .

It was the 14th of February. St. Valentines Day. I had just achieved the birth I had been dreaming of. The birth I had had to fight hard to even attempt, a triumphant vaginal birth after 2 cesareans or VBA2C. A Valentines VBA2C ! A water VBA2C at that, with nothing but gas and air …And I should have had my moment, the moment I missed out on with my two previous babies, the moment that I see immortalised in so many birth photographs – the moment you first meet your baby and lift them on to your chest and the two of you melt into each other. My ‘I did it’ moment, my ‘my body isn’t broken’ moment ….but what happened was quite different.

I will write about T’s beautiful, positive birth in another post and give it the attention it deserves, but right now I’d like to tell our breastfeeding story (so far) and to do so I need to explain what happened instead of my ‘I did it’ moment;

T was born without a nose.

She has what’s known as Complete Arhinia.

Despite concerns about her facial profile at our 20 week scan and subsequent amniocentesis, no-one was expecting this. So when I lifted my tiny miracle out of the water and the medical team saw her face, alarm bells, literally, started ringing, and people started shouting… and people started running… and people started crying. The midwife, hastily, severed her cord and whisked her away before I could even speak. To say it was traumatic would not do it justice. My whole world had been snatched from me and I was reeling …and bleeding, as it happened, and alone in the pool. As moments go, I wish someday I might forget how painful that one was.

When T began to breathe and stabilised (her cord should never have been cut as it was supplying her oxygen but I’ll not get into that now) I was allowed to see her for one brief cuddle before they took her to NICU.

first hold

Our first all-too-brief cuddle.

I wasn’t able to feed her. A baby needs two airways to breastfeed. The cruelty of that cut me like a knife. I was a breastfeeding advocate,  activist even. I was still breastfeeding her big sister, Miss C, who had just turned two, I had a painting of myself breastfeeding Miss C hanging in my living room, I had attended conferences, I was training in breastfeeding support to help other mothers, I write breastfeeding poetry for crying out loud!!!   Breastfeeding was a huge part of my life and here I was with a baby I couldn’t feed. It felt like the cruellest joke, it was hard to believe.

To be honest, the shock of everything and the physical aftermath of a long labour and jarring emotional trauma, means that I’m a bit fuzzy on exact events for the following 48 hours, but what I do remember is how broken my heart felt. I remember being in the room that night after my husband had gone home to my other two babies, who were just two and three years old. Being alone in that room. Alone and empty.  I remember crying so hard I couldn’t breathe  and I remember how it hurt not to have my baby, how it hurt not to know if she was, or ever would be, alright. The pain inside was so raw, so heavy, I didn’t think I’d ever recover.

When they wheeled me down to NICU to see her, it was shocking! As I’m sure it is for every mother who has to see her new born baby lying behind a plastic wall with wires and tubes coming out of them. Her face, the face I love so deeply and completely now, looked strange to me then, although the layers of tape holding her breathing and OG (oro-gastric) feeding tube in place, didn’t help. I was so scared.

2013-02-15 13.44.00

Vented after sedation for a head CT scan.

I was scared for her and for me and for what this meant. My head hurt with questions; Would I love her enough? Would she be ok? Would I ever be able to feed her? Would I be able to cope? Would anyone else ever love her? Would she forgive me for leaving her in that box with strangers every night? Would she ever be happy? Would I?  The list seemed endless. Of so many things, I was scared.

I was only allowed to hold her briefly every couple of days due to strict ICU staff.

I was only allowed to hold her briefly every couple of days due to strict ICU staff.

I cried while the consultants explained what they could about T’s face. They admitted they had never dealt with, or even seen this condition before. We were told that a total of 37 cases has been recorded in medical literature.

Thirty seven.

That’s historically. Worldwide!

That feeling of being alone was magnified with this information. We were very alone. We were, 1 in 500 million, alone. There was no website for this, no support group for us, no charity championing our cause, no glossy leaflet about what to expect.

Thankfully tests revealed her brain and heart were healthy and normal, (apart from one small hole in her heart that we were told was not uncommon and not to worry about). And initial genetic tests showed a normal karyotype and no evidence that T had any known syndrome. It was just the news I needed and I clung to that information while doctors scrambled to provide us with any other insights.

I cried when they explained that she would need a tracheostomy so she could breathe while sleeping and eating.  A tracheostomy would require huge amounts of care, it would mean I wouldn’t be able to hear her cry or coo or giggle. It would mean a huge change to our family life and much less freedom. I couldn’t imagine how we’d cope and I was sure you couldn’t breastfeed a baby who didn’t have a nose and breathed through a hole in their neck. It was devastating news, any hope I had was disappearing. …… But I was wrong, finally one consultant said she couldn’t see why we wouldn’t be able to try, at least, and some further research proved that we had every reason to be hopeful. It took a little digging, but I did find a short thread discussing breastfeeding babies with trachys. It was theoretically possible. We would just have to wait and see if T’s sucking and swallowing co-ordination were up to the task. Until then she would be tube fed. I was told to take comfort in the fact that she would still be getting my breastmilk. It was a small consolation but I knew where she needed to be and every cell in my body ached to feed her.

I loved her so much.

I loved her so much.

I expressed my milk for her. I found the pumps kept causing me pain and I already knew how to hand express and quite quickly established a good supply. I continued hand expressing every 2-4 hours. I couldn’t bring myself to leave the hospital without her so I stayed in a family room in the ward. Walking down the corridor at night to make a milk delivery was so important to me. It was the least I could do.  Walking back to my bed without her never got easier.

She had her tracheotomy operation when she was 8 days old. I felt sick to my stomach the whole time, but by now I was anxious to have the  procedure done as it would mean she would get out of the incubator and that the large intubation tube, that was so crudely taped to her mouth, could come out. It meant we’d get to see her sweet little face. She was admitted to PICU (pediatric intensive care unit) following her operation and…

…And then there she was….

post-op, T sporting her new trachy.

I was no longer worried about the trachy, we’d deal with that, but now I could see her and kiss her little lips and hold her tiny body. And of course I hoped against hope that I could feed her.

The staff wanted her to recover from surgery before attempting to breastfeed so I waited.  I was now allowed to hold her, so much of this waiting was done while she slept in my arms. How much faster the time went  now I was holding her. It felt amazing, I never wanted to put her down. It was so healing and not surprisingly my milk supply took a giant leap. Oxytocin for the win.

When we did get a chance to try a breastfeed, it was awkward and tense. I was terrified of hurting her by pushing on the trachy, which, as she was so small, came out further than her face. Positioning was difficult and circumstances were far from optimal. Sitting in an upright, armless chair, watching this wire and that one, trying to get her face close enough to latch with out touching her new neck accessory with my swollen post-partum breasts. It’s no wonder we struggled. I told myself to give it time, that it was to be expected after this long being tube fed.

After much fumbling and failing, late at night on her 10th day in the world, we did manage a latch eventually and we celebrated our first breastfeed,  it was a moment I will treasure forever.

first feed copy

Our first breastfeed 10 days old

“She’s doing it, she’s doing it” I whispered to a nearby nurse, not daring to breathe or move in case the magic stopped. We would struggle to repeat this moment in the coming days and weeks but every now and then it would happen and my world would feel right again. They were scattered moments of bliss throughout some of the worst days of my life.

It would take us another 4  weeks of OG tube feeds and 3 more of bottle feeds,  before our dreams of exclusive breastfeeding became a reality.

T would eventually thrive as a fully breastfed baby.

T would eventually thrive as a fully breastfed baby.

Follow our journey to exclusively breastfeeding with a tracheostomy in Part Two, click HERE.

If you would like to help our family ease the financial strain that T’s condition brings, please consider Donating what you can HERE.

We are grateful for your generosity and support.

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48 responses »

  1. Pingback: Breastfeeding; Tracheostomies, Tears and Triummphs. (Part Two) | Birthing and Breastfeeding; Overcoming the Odds.

  2. Absolutely & totally beautiful. You 2 are amazing! How awesome that God saw it that you’d be marched up! Just totally beautiful! Go ON with your bad self! :*)

    • Absolutely & totally beautiful. You 2 are amazing! How awesome that God saw it that you’d be matched up! Just totally beautiful! Go ON with your bad self! :*)

  3. Wow! I am so encouraged by you! You fought for your baby and for what is best for her and you have given her the best start in life. Your little one is beautiful. I will be following your story here and will be praying for you and your family. But come on, with such a strong mom and so much support, this little girl has a very bright future!

  4. Good job momma! I can tell by reading this article that you’re a great parent! Makes me so proud to see someone work so hard at breastfeeding, when some never even give it a thought.
    & your baby girl is BEAUTIFUL!
    *This is weird but when I was little I used to always push my nose down when I looked at my self in the mirror & think “Gosh people would look prettier without noses”. I know it’s strange but I’ve always thought noses were weird and ugly, they distract from the other facial features. (at least they distract me, the very first thing I notice about anyone is their nose)
    But when I look at your darling daughter all I see is big beautiful eyes, a cute little mouth & chin & just an overall pretty face! 🙂

  5. This baby is so beautiful…. she looks like a sweet little doll and you Mama are amazing. Congratulations on your VBA2C…and congratulations on your PERFECT baby!

  6. She is SO beautiful and adorable!! I just want to hug and kiss all over her cute little face! Precious beyond words. You are an awesome and amazing momma and woman!

  7. Exactly my thoughts about God matching you up, you and your little lady and family are such an inspiration and I am honoured to know you, beautiful story I was in floods of tears several times xxx

  8. Beautifully written and a beautiful baby!! I am reading this with the tears rolling down my face- thanks so much for sharing!

  9. Well done mama! Such a beautiful girl who is so lucky to have such a brave mama! Sat reading with tears in my eyes! Beautiful, just beautiful xxxx

  10. A truly inspiring story… When people say “i couldn’t breastfeed, my baby didnt have a good enough latch”, i will tell them this story… Your little girl is beautiful xxx

  11. amazing just shows anyone can breast feed if they want to
    well done to you both
    and she is the prettiest little thing

  12. Tears are flowing down my face… I was so excited reading about your Fujitsu latch!! She is the cutest!!! Much love and I’ll join your cause is ya want…. :)!

  13. This is such an absolutely beautiful story! and my husband saw her photo he said i must tell you she is absolutely beautiful!!! congrats on the breastfeeding!! xx

  14. You are one AMAZING woman and mother!!!! Your baby, a fighter and a beautiful sweetest little one~~ I just wanna say, I truly adore both of you and I wish the best for you both.

  15. Amazing and inspiring. I feel so blessed to have read this miraculous story of a devine purpose in a beautiful miracle being born and the amazing love of a mother!!

  16. I am standing in the light of a dimly lit room, having just put my little one down for the night. Briefly, before I climb in next to him, I decided to check my Facebook news feed, which is when I saw the gorgeous photo of you and Tessa in your new sling. Then I read your story, and my soul absolutely broke and soared as I learnt all about what you, a perfect stranger, have been through. There aren’t words to describe how much courage, strength and beauty lie within you…and how much radiance lives within your little girl too. It’s tangible and incredibly moving and I have been deeply touched by it. Thank you for sharing your story, and for letting the world see something so vulnerable, intimate and tender. It has given me the energy to keep going with my breastfeeding mission…I was disabled for seven years before having my son and truly had no idea whether I would even be able to withstand breastfeeding him for one day, let alone a week or a month. Each feed is a challenge, an opportunity for digging deep and finding a way. Each feed asks me to trust and believe in my capacity to nourish my son, in spite of all the odds stacked against me. And so, I keep going…one step at a time. I have climbed a very different sort of personal Everest to you, but I just wanted to say from one climber to another…way to go you awesome, awesome woman and Mother. Your daughter is so beautiful, and your spirit so magnificent…I shall remember you both tonight, tomorrow night and the nights that roll by after that…I shall remember this moment, as I stand in this partially lit room – because there is in fact a great light in my presence and I feel absolutely honoured to have ‘met’ you both. With love, from a perfect stranger! Amelia xx

  17. Omg what a fantastic story THANK YOU for sharing it. In the moments of reading it I was with you on your emotional roller coaster. You guys are truly inspirational! All the best in the future! What a little cutie! Xo

  18. My son has had his trach since 4 months old..he is now 6 🙂 And don’t worry,just because she has a trach doesn’t mean u wont hear those coo’s and giggles…My sons first words were Momma..he still has a hard time with speech but he can definitely talk and make sounds..Good luck to u and ur baby girl..prayers

  19. Oh my word–she is adorable! Our daughter had a trach for 6 years due to a cranio condition. We’ve met an amazing group of people through her! Thanks for sharing the beginning of your story. Blessings.

  20. Pingback: Tessa. | Tessa: Born Extraordinary

  21. Pingback: What Is Breastfeeding? | The Breast of Rhymes

  22. She is beautiful. I’m so in love with her fave. Too cute. Her eyes sqy how happy she is! Good job mamas. Hugs

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