Aurora Valentine Cunningham was sent to this Earth for only a very short time. Arriving nine weeks premature, her early days were a whirlwind of medical tests and procedures. Having experienced several complications including respiratory issues and a brain bleed (which would lead to cerebral palsy) she was also diagnosed with a genetic condition known as Noonan's Syndrome.
Now, during World Breastfeeding Week, Aurora's mother Martina Kerr shares the battle she fought to ensure Aurora received her nourishing breastmilk, despite many obstacles.
"I had many preconceived ideas as to how my daughter Aurora would be born. Firstly; it would be at home with a midwife, my partner and my sister, and secondly that my baby would be put to the breast immediately after she was born to encourage bonding and assist with a natural third stage. Unfortunately, she had other ideas and was born, via caesarean, 9 weeks early, with a genetic condition causing various issues; including a heart defect; and so, the gentle birth I had planned went out the window and the fight for her survival began.
The first time I saw her she was four hours old, wrapped in bubble wrap and hooked up to all sorts of machines and monitors to help her breathe. A drip inserted into her foot was supplying the essential nutrients directly to her bloodstream. It was a harsh realisation that at this point and time my baby didn’t need me – she was being kept alive completely by artificial means. I had a little cry, but picked myself up (as I would do many times over the next year) and set about trying to do all that I could to help her grow big and strong. It was at this point I was told how particularly important breast milk was for neonates, because it reduces the risk of Necrotizing Enterocolitis (NEC) which is a disease that causes the intestines to be unable to digest properly and can be fatal. In the same breath, the nurse told me that a baby's sucking reflex doesn’t kick in until around 35 weeks gestation, and that I would need to express breast milk in order to feed her until that point.
So, I was given a yellow hospital grade pump and left in the privacy of my room to learn how to use it. It hurt and didn’t seem overly successful, so I pushed it away and hand expressed 1mL. I felt so inadequate when I took that into the NICU, but I was told that in actual fact it was more than a lot of women get. My next attempt was nowhere near as successful, but again the nurses assured me this was totally normal; that my milk hadn’t come in yet, and that my body was still in shock and under unusual stress which would obviously take its toll. They also reminded me that my body was still 9 weeks away from thinking that it would need to produce milk, so to go easy on myself. I was determined that it was mind over matter and persevered – the nurses told me to express every four hours, but I did it every two, just to make sure! When day three came around and I attached my yellow pump again I noticed a change. The milk came out much faster and there was more of it. It was also a little bit whiter now, more like the colour of cream, rather than the bright yellow that my colostrum had been. It was a bit thinner too. By the time I was discharged from hospital (Aurora remained in the NICU for around 9 weeks) I was providing all of her milk needs via expressing.
Although she was still too young to latch on, once she had progressed to only needing oxygen, I was allowed to put her to the breast. You could tell that she was comfortable being there; her heart rate slowed, her temperature stabilised, and her oxygen levels were better. It was a proud mummy moment because I finally felt as though my little girl needed me! She was enjoying having me there, and I loved the feeling that I was finally able to do things that a normal mother could do. Every feed I would attempt to put her to the breast and even though she had hit the magical 35 weeks she still couldn’t do it.
It was then that I asked for a review from the hospitals lactation consultant who suggested nipple shields. When that failed, I asked for the feeding team (a speech pathologist and an occupational therapist) to review a feed. It was then realised that her suck was just far too weak to draw milk from the breast. That her tongue was very uncoordinated and that using a dummy may help, but realistically to expect that she would never breastfeed. I was not ready to give up my dream of breastfeeding just yet, and so I asked the advice of anyone I could find! It was suggested that I continue to attempt to breastfeed whilst the milk was delivered via the naso-gastric tube, so she would at least attribute the breast with feeling full. We attempted this method of feeding for all feeds during her stay in the NICU and for a few months after we went home, but after a while it became obvious that it was not going to work.
The nurses were keen to put her onto the bottle, but I was still concerned about breast/bottle confusion and so I kept declining their offer, until one day when I walked into the NICU to find a nurse going against my wishes, and using a bottle. Needless to say I was not happy, but it did demonstrate that she couldn't bottle feed like a normal baby either. After the failed bottle attempt I started to research alternative feeding devices. I attempted finger feeding using a tube and my little finger to try to train her to suck and receive milk. I progressed from there to a supply line feeder system designed to allow baby to suck whilst being tube fed. Again this proved too difficult. So I admitted defeat and started down the path of bottles with my expressed milk in them. It took a while before we found a special needs feeder bottle called a Habermann Feeder, but with the assistance the bottle allowed me to provide (it had a squeezy teat) she was able to at least take some feeds orally, the remainder were via the tube and administered by a feeding pump.
Expressing was generally quite easy for me, although there were a few times when I thought I was going to run out of milk. When I first went home I had bought a small portable pump to use, thinking that it would only be used for a short time. After a few weeks I found myself attached to the pump for about 45 minutes of every three hours trying to express enough for her feeds. Needless to say I soon bought a double pump, and my pumping time reduced to about 10 minutes! The use of a hands-free expression bustierre also left my hands free so I could replace her dummy or play with her (or use EB if I was lucky enough for her to be asleep.) The downside was that I felt like a cow in the milking shed, and looked like one too...
Due to her inability to suck she was unable to have solid foods like other children. As she grew, her needs increased, and so did my pumping time. My supply never wavered. Each time I asked my body to provide more milk it did. It did take up a lot of time, but as I said earlier there wasn’t a lot I could do for her health-wise, but I could do this. There was pressure from the nurses to give myself a break and “just let her have formula” but I refused and I am eternally grateful that I did because despite the fact that I was pumping every hour and a half to express enough to feed her, when she passed away just one week after her first birthday, I knew that I had done everything I possibly could have done for her. It doesn’t make the loss any easier, but at least I have no regrets."
Noonan's Syndrome is a genetic disorder that occurs in between 1 in 1000 to 1 in 2500 live births each year. Children often have unusual facial characteristics, are short statured and suffer from congenital heart defects. Currently there is no cure; and treatment consists of a general life care plan, including symptomatic treatment. Life expectancy for someone with Noonan Syndrome is varied, with many living well into adulthood; however this depends predominantly on the diagnosis and management of heart conditions.
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There wasn’t a lot I could do for her health-wise, but I could do this.