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 immortalized 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.
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 stabilized (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.
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 cruelest joke, it was hard to believe.
To be honest, the shock of everything and the physical aftermath of a long labor 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.
“…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 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.
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 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….
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 that 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.
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.
“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.
Staff attitudes were a huge stumbling block. I’m not sure whether it was because they had no idea what a baby like T would ever be capable of or if the indifference was endemic, but breastfeeding was certainly not a priority and I felt that my requests for extended periods of privacy or time to try to breastfeed were seen as an inconvenience by many.
Biological breastfeeding in a laid back position, which is known to stimulate baby’s natural reflexes to root and latch, was impossible as her trachy came too far out in front of her chin and chest. Laying her on my chest just couldn’t be done. Besides I was never given anything except a ridged, armless chair in which to try.
She vomited at least every other feed and I was told that until she put more weight on that the tube would remain in place. Of course this severely hindered any attempts to breastfed since the poor girl had to try with a tube taped to her mouth. Taking it out to try would mean it would need to be re-inserted in time for her next tube feed and since passing a tube down her throat made her gag and often vomit it all seemed like a catch 22 situation. It left me conflicted and confused. I didn’t know what to do for the best. Usually, a feeding tube would be passed through the nose as it is generally less invasive. Poor T didn’t have that option.Continue reading to find out more about Grainne and T’s breastfeeding journey together…(Page 2) (Page 3)