Emilie Part One - Her First Three Days

When my first daughter, Emilie, was born, she was unexpectedly taken from me at 3 days old because she couldn't breathe properly. I suppose in a way, I am one of the lucky ones, because some mothers have their babies whisked away from them at the moment of birth because they are so, so sick. I was lucky to have 3 days with my daughter in hospital before we were separated. In another way though, it was very traumatic to have her taken at 3 days old, because this is the day my milk came in, and baby blues came to visit.

Emilie was born with severe Laryngomalacia which means that from her very first breath, she struggled to get enough air in to her lungs. Laryngomalacia is where the structure of the larynx (voice box) is soft instead of rigid, so upon inspiration (breathing in) this structure collapses into the airway causing a dangerous obstruction. It is a very common birth defect, in that most babies born with it are a very mild case and causes no other complications other than noisy breathing (sounds like a squeaky noise when the baby breathes in due to the obstruction).

We later found out that Emilie also was born with a Laryngeal Cleft. In basic terms it means that just where her Laryngomalacia (LM) was obstructing her passage of air into her lungs, her Laryngeal Cleft (LC) prevented her from closing off her wind pipe properly when she swallowed milk, meaning that she was very much at risk from inhaling or "aspirating" her milk. This was NOT picked up until after she had turned 2, despite a test called a Barium Swallow at 5 days old and all the Laryngoscopies she had to go through, it was missed. This caused her so many problems as a baby. I am actually really surprised that she made it through without having some serious emergencies. She is a fighter.

LM on its own causes feeding difficulties in babies, even in mild cases. I am not sure how much weight this has, but I have read in a medical journal that the nerve that controls the "suck-swallow-breathe sequence" in babies is somehow interrupted in cases of LM, so that there is no brain signal that tells the baby how to feed in an LM baby, no matter how hard you try to get them to latch and suck, that vital instinct that most babies are born with just isn't there.

Three days before Emilie was born, my good friend from highschool had a baby girl. I went to visit her in hospital the day before Emilie was born and while I was there, my friend picked up her tiny bub and popped her onto the breast as if it were the easiest thing in the world. It just seemed so natural and I thought to myself, I can't wait until my baby is born so that I can experience the joy of breastfeeding! I never imagined just how hard it would be to feed my baby.

With her very first breath, Emilie struggled. Everyone in the room heard the screeching, high pitched breathing noise, and I thought "OMG what is that?"

When she was placed onto my chest, I said to the midwife, "why can't she breathe?"

"Oh, she may just have a bit of mucus in her airways still... we will try and suction her in a minute"

"Why isn't she crying?" I asked

"Not all babies cry when they are born" I was told.

"Why is she blue?" I asked
"Oh, all babies are blue when they are first born, their circulatory system needs to crank into gear and get that blood moving"

After a while, Emilie was really finding it hard to breathe and was still blue so the midwife whisked her away to suction some gunk out of her airways and some oxygen to help her get started.

She was still making that noise. I wanted to know what they were doing to her over there. I still had the epidural in so I was confined to bed, and all I could see was a bunch of doctors and midwives standing around my baby. They were in the way and I couldn't see her. I heard the doctors and nurses whispering and I heard them say this word... Strider... whisper, whisper, [insert medical jargon here], strider...

What is strider? I asked a midwife. "Oh that is just the sound she is making, it's very common in newborns"

"Why is it so loud? Is she ok? Can I see her?"

"She is just having some oxygen lovey, she is fine, though, she is nice and pink now"

Strider, strider, this funny word going around in my head. It made me think of the pram we had bought for her. It was called a Strider. It made me think of a funny man with long legs taking big steps down the footpath. Strider.

I later found out it was spelt STRIDOR:

stri·dor/ˈstrīdər/

Noun:

A harsh or grating sound. A harsh vibrating noise when breathing, caused by obstruction of the windpipe or larynx.

Emilie was allowed to try and breastfeed once she was stable. But no matter how hard the midwives tried, they could not get her to suck. She latched on for a second, but just lay there, doing nothing. "Don't worry," they said, "she is probably a little bit sleepy from the birth. She has had a tough day too! We can try again later."

Back in the ward, I lay there in my bed just staring at her through the clear perspex of the hospital bassinette. She was so beautiful, she was asleep. But that noise worried me. She was still making that noise. It was a bit softer now, and sort of sounded like a dove cooing.

But things were not ok. A midwife took her to the nursery so I could sleep without her noise. I woke a few hours later and heard a baby crying. I rang the bell. A midwife came.

"Do I need to feed my baby yet...?" I asked

"Oh, no, your baby is fast asleep, that isn't your baby crying. Try and get some rest"

A few hours later a midwife came and woke me. "It's time for you to feed your baby," she said.

I dragged myself from bed into the nursery and was handed a baby who was shoving her hands into her mouth and scratching her face. Her stridor was very loud.

"Why is she making that noise?" I asked once again.

"Oh, newborns make lots of strange noises when they are first born! Don't worry, it is normal."

I sat down and the midwife helped me to latch Emilie. She latched, then did nothing, just lay there with my nipple in her mouth. The midwife tried squeezing my breast to get some colostrum into her mouth and prompt her to suck, but nothing. We tried the other breast. "C'mon little one, mummy has great equipment, let's see if we can get you to suck some milk" nothing. Tried the footy hold. Nothing. Looked into her mouth for a tongue tie. Nothing. Tickled her cheek. Nothing. Put a finger on the roof of her mouth. Nothing. Nothing. Nothing. It didn't work.

"Well, she is asleep again now, maybe we can try again in the morning," the midwife said.

A couple of hours later when it was just starting to get light, we tried again and the same story. She just. wouldn't. suck.

At every feed, every midwife or lactation consultant tried something different, lay down to feed her. Nope. Lay sideways to feed her. Nope. Try a nipple shield. Nope. Have you tried the footy hold? Oh it didn't work? Let's try again. Nope. They all squeezed my goddam boobs until they were so sore I was beginning to wonder how I could have every complained during childbirth!

Then Emilie just slept. And slept. And slept. This wasn't good, the midwife said. We need to get onto this feeding issue. So I was given bottles and sent to the expressing room to get some colostrum for Emilie.

But even with a bottle in her mouth, she still wouldn't suck. So out came the syringe. the midwife syringed some colostrum into her mouth and finally she swallowed it! Nearly 24 hours after her birth she finally had something in her tummy. We just needed to get her to feed again.

It was the same cycle at every feed. Try to latch her. No sucking. Find a midwife. Be poked and squeezed until we gave up and syringed her again. But with every shift change, I had to explain the situation to the next midwife and convince her to let me use the expressing room and syringe. "Your baby is too lazy, you can't keep offering the syringe or she will be too lazy", they all said. Weigh the baby, oh she has lost more weight. She is starting to get jaundice, you need to flush it out with milk... The pressure was ON to get her to feed. And she was still so noisy when she was breathing. None of the other babies in the nursery made that noise. There HAS to be something up???

On the morning of her third day, I woke up and my milk had started coming in and my breasts were very engorged. I ran to the the nurses station and cried, "I need to express. RIGHT. NOW!!!"

I sat in the room and expressed and felt so much better. But, oh no, you can't do that every time. Your baby needs to learn to suck. Just keep perservering. She will suck when she is hungry enough... AARGH tearing my hair out, I sat in the nursery and watched another new mother who I had seen previously breastfeeding her baby with no problems, refuse to put her baby to the breast because she had cracked nipples, and demand a tin of formula and that was it. I just broke down into tears.

At Emilie's next feed, a lovely midwife who was about the only one who really cared, came into my room to help me try and feed and when we gave up and got the syringe, I was syringing it into Emilie's mouth but she choked on the milk and turned blue. The midwife grabbed her from me and turned her over to get the milk out. Emilie coughed and vomited and her colour returned. The midwife gently told me to sit back down. She said, "Your baby needs to be in a better equipped hospital than this. The combination of the stridor, the feeding problems, the jaundice and the loss of more than 10% birth weight, I am so sorry, but I am going to have to call Princess Margaret Hospital and get the Newborn Emergency Transport Service to transfer her to the Neonatal Intensive Care Unit. There is just something not right and I just can't discharge you to go home when she is like this. I am so sorry..."

I just broke down into tears. They were tears of heartbreak, but at the same time, tears because someone had finally listened and yes, there was something wrong but something was going to be finally happening about it. The actual emotion of being separated from my newborn daughter didn't hit me until later.

To be continued...