Many babies are born with facial deformities. For instance, did you know that every year, one in every 800 babies born will have a cleft palate (Cayuga Medical Center 2013). Often their mothers, understandably, need specialist support to enable them to breastfeed successfully. Yet as their scenario is atypical (being a 0.1% minority), such specialist support is hard to come by.
Now, imagine that your baby is only 1 of 37 in the history of the world to be born with a specific facial deformity! That’s exactly what happened to the mother in this week’s story. Unbeknown to this mom, as her water-birth reached its climax and she lifted her brand new little one out of the pool, it was discovered her perfect baby girl had not developed a nose. How could this little girl ever manage to breastfeed with her mouth as her only airway?
“It was the 14th of February. St. Valentines Day. I had just achieved the birth I had been dreaming of. A 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. Let me tell you my story.
My daughter, I call her ‘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 awaybefore 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.
Taken from me
When T began to breathe and stabilised (her cord should never have been cut as it was supplying her oxygen, but that’s for another rant) I was allowed to see her for one brief cuddle (see photo) before they took her to NICU.
I wasn’t able to feed her. A baby needs two airways to breastfeed. The cruelty of it 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.
It was shocking
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.
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 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 history.
That’s historically. Worldwide! T was a miracle.
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.
Healthy and normal
I was only allowed to hold her briefly every couple of days due to the strict ICU staff. On the positive side, I got some good news – 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 (a surgical procedure where the surgeon creates an opening in the neck at the front of the windpipe) 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.
Breastfeeding – theoretically possible
…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 online 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 so that’s what I did. Quite quickly I 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 there she was:
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!
The first breastfeed
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 without 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.
Tube and bottle feeding
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 struggled to latch. Every path I knew to get a baby to the breast was blocked by obstacles and despite having the most amazing support network any woman could ask for, (outside of the hospital I might add) the whole situation felt impossible.
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 breastfeed 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.
I did manage to get her out of the incubator by causing some fuss and insisting that if there was no medical need for her to be in there then I wanted her out. But they wouldn’t let us out of NICU even though her medical needs were minimal and she was breathing room air (albeit through a hole in her neck).
Physical contact discouraged
So in a corner of a busy intensive care unit with babies being kept alive on machines and IV’s my baby girl slept in a cot and her mumma attended to her every need throughout most of the day.
Skin to skin, or kangaroo care, which studies have proven to help babies thrive by reducing stress and helping regulate temperature and heart-rate, not to mention increase milk supply, was never encouraged. Actually if I’m honest it was actively discouraged. In fact, despite a shelf full of leaflets purporting its benefits in the family room, during my 5 week stay I did not witness a single act of skin to skin by any other mother.
My own attempts were awkward and half-hearted as staff made their feelings clear. “MINIMAL HANDLING RECOMMENDED” was written in her notes. This was due to her supposedly not “tolerating her feeds” and the belief that “handling” her would cause her to vomit more than she already was. I was incensed by this and, over the course of the next weeks, gradually fought (when I had both the mental and physical strength to) for more and more contact with my baby, until I was in charge of nearly all her day-to-day care. I learned how to tube feed her, how to suction her trachy, changed all her nappies and expressed day and night.
Supplementation without consent
Although a healthy, if not huge, 6lb6oz at birth, her rocky start and having had surgery, meant T was slow to put weight on. I was asked, repeatedly, to consent to high calorie fortifier, (which had actually been given in her first week without my knowledge or consent until I discovered it and quickly and vocally made my displeasure known. I had been clear that nothing but breast milk be given and this was a major violation for me). I wanted absolutely no foreign protein in her diet and was trying to remain confident that my milk was sufficient just as it had been for my other two babies.
Then there was her terrible reflux or ‘not tolerating feeds’ as they put it. Their solution was to add thickener and again I had to deny permission on several occasions and to several different medical professionals. I felt if they would only allow her to feed upright, rather than flat on her back, (as per hospital policy) that maybe, just maybe, she wouldn’t throw up quite so often. They also wanted her on three hourly feeds but this meant bigger volumes and a higher likelihood of vomiting. When I explained that my previous breastfed babies would have fed more often than every three hours in their first month I was told that it “was not sustainable no matter how good a mother you are.” Well that was me told.
Barely hanging on
The hospital stay was gruelling and I was being worn down by the pressure and stress of everything and my confidence in myself was waning. I often broke down when I let thoughts of what the future might hold for us, creep in. I still cried every night when she wasn’t with me. I couldn’t stop my tears when I was told of her multiple eye conditions and that she had little hope of ever seeing out of her left eye. It was a lot for anyone to cope with and I was barely hanging on.
After weeks of frustration and sporadic successful short feeds at the breast, one consultant declared that “T’s feeding was what was keeping her in hospital”. I had to make a choice and by this stage we needed out of hospital so badly that I switched all my efforts from trying to get breastfeeding established to simply getting her weight up sufficiently to get her discharged. I insisted on tube feeding her in an upright position on my knee and held her up for hours afterwards to keep her milk down. Even feeding her in a wrap on occasion. It worked and her weight gain improved – proving that neither fortifier or thickener had ever been truly necessary and finally after 5 weeks in ICU, we were going home. I was terrified. And happy …but mostly terrified.
Getting T home to her big brother and sister was a truly beautiful moment for me. To finally have my babies all in the same place was a powerful tonic. T was finally where she belonged; Home. I felt the pressure of the hospital slowly begin to lift.
Against motherly instinct
I struggled through 4 days and nights of truly exhausting tube feeding at home. It went against every motherly instinct I had, and now free of the hospital, I was beginning to regain some of my lost confidence. It required so much effort and watching her arch and cry in pain as soon as the milk began to flow down the tube was wearing away at my soul a little at a time until finally, on the 4th night at home, after T had just thrown up an entire feed that had taken me nearly an hour to administer, I had had ENOUGH.
What was I doing? What was I doing to my baby? I asked myself over and over. Why was I putting her and me through this? When I knew in my heart of hearts that she was capable of breastfeeding? There had to be a better way. I was the kind of tired that makes your insides shake and sitting on the edge of my bed crying into my hands and the only thing I knew for certain was that I wasn’t putting that tube down her throat again. We would try anything but not that. Not again……..
That night after about 20-30mins she latched and fed and I sighed and tried to enjoy it and to not think about what tomorrow would bring.
I never did put that tube back in.
I soon discovered that T would take my milk in a bottle easier, as she was having real difficulties actually latching onto the breast, despite much rooting and a strong urge to suck. When my good friend and LLL (La Leche League) leader came to help, I showed her how T would root like crazy, back and forth over my nipple, but not open her mouth and latch. Pressure on her chin didn’t work, it was impossible to get her to open her mouth enough.
The role of scent in breastfeeding
Watching her with a bottle we could see that her suck reflex was triggered as soon as the teat reached her soft palate. The problem was, you can get a bottle into a baby’s mouth without their participation. This was not the case with my nipple! We wondered if not having a sense of smell was hindering T’s efforts and decided that perhaps we need to re-asses how important a role, scent and smell play in breastfeeding.
Baby-wearing to aid breastfeeding
We still occasionally got lucky and she would feed from me. I began using the bait-and-switch method. I would get her to begin sucking on her bottle or dummy and try and quickly swap it for my nipple. The exaggerated latch or ‘flipple’ technique helped too, as did trying when T was sleepy. I often wished I had an extra set of hands, as T latched best while I was walking and I still had to make sure not to push on her trachy, and we’d have to stop regularly to suction her tube. My trusty ring-sling came in very useful. Each latch took an average of 20mins to achieve. I’ve honestly never worked so hard in my life. Every success felt like the Holy Grail, like climbing Everest, like my Sistine chapel.
The failures hurt in a place deep inside. They were more than failures, they were rejections. The agony of holding your own baby, offering yourself and being rejected was painful on a cellular level. When I had tried every position and trick I could think of, I would sink down into the chair, give T the bottle it felt like she was crying for, and dry my tears until it was time to try again.
The days seemed so long and were only possible due to the incredible support of my extended family. They cooked, cleaned and looked after me and my toddlers, while I dedicated my time and efforts to our newest member. I will be forever in their debt for the way they cared for us during that time…… then something happened that strengthened my resolve to continue -something so wonderfully powerful that I believed we could move mountains every time it happened…
T started smiling! She started and did not stop!
Slowly, (agonisingly slowly to me) the tide began to turn and we had more successes than failures, I remember realising one day that T had had more breastfeeds than bottle feeds. It was just the sign I needed, I was spurred by our milestone and so we continued to work hard, and my family continued to keep my household running, and T continued to thrive!
Unbelievably three weeks after being discharged from NICU, fully tube fed, T was EXCLUSIVELY BREASTFED!! She was eight weeks old, and I no longer had to express milk or measure feeds. I was done with tubes and over bottles. We had made it. We were living our impossible dream. Our baby, born without a nose, who breathes through a tracheostomy is still exclusively breastfed at six months. She made it without fortifier, without thickener, without formula. She thrived without introducing solids early or weaning my toddler. I believed in her and in my body’s ability to feed her. I believed in breastfeeding and it came true.
We even celebrated our first tandem feed recently with Miss C (T’s trachy had previously made positioning tricky for tandem feeding). Another amazing moment that I never thought we’d get to experience. I was so proud of us and so full of love for my babies, it was beyond anything I had dared to hope for.
We would face more challenges in the coming months including, a traumatic surgery on her eye, that caused her weight gain to slow and subsequent pressure from our dietician to offer solids and or fortifier again. But we held firm and now at six months she is back on her original centile line, has met every milestone and continues to develop normally in every other way. She brings so much happiness and love to our lives, we can’t imagine life without her.
Our consultant is planning to de-cannulate T (remove tracheostomy) before her first birthday and any nasal construction will likely not be until she is a teenager. There is still much uncertainty about the future and our options regarding her face but these last months have shown me that she is stronger than we could have ever hoped and that with the right support, sometimes things aren’t as impossible as they seem.”
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