This is a very long post, there are a few ‘f-bombs’, and it’s probably disjointed and hard to read at times. Consider yourself warned.
It was three weeks ago today that I gave birth to Miss Katelyn, our baby girl. During the final week of my pregnancy we discovered that her tummy was much bigger than her head (The fancy medical term for it is Asymmetrical Growth) and my doctor was concerned. With her tummy measuring as big as it was, there was a very real possibility that she may get stuck.
The complications of that had me terrified: a broken clavicle, brain damage, or worse. My friend who came with me to the appointment was tearing up. I just sat there nodding; inside my mind reeling. My doctor gave me all the information I needed and asked me to decide how I wanted to give birth.
In the end I decided to stick to the original plan and be induced; my doctor assured me that she would be present, as would a paediatrician and two senior midwives. If it looked like Katelyn was struggling for even a second, we had all the right people there to make sure she would be okay.
The big day came and everything went perfectly. My midwives were incredible. I didn’t start ‘feeling’ the contractions until I was 4cm dilated. I was allowed to stand up and move around. My baby girl was out with no complications in just over two hours.
I can’t even begin to describe how I felt. I cried big, heaving sobs of happiness when they put her onto my chest. She was absolutely perfect and I was instantly in love. Everything was going to be okay.
Then came time to feed.
I had always thought that Liam had issues feeding because I had the shot of pethidine too late in the show and he was basically born stoned. However, this time, aside from a few puffs of the laughing gas, I had no drugs at all with Katelyn, but she was even worse at this whole breastfeeding thing than her brother was.
They had to feed her a few bottles of formula because her blood sugars started to get dangerously low. I had to feed her colustrum from a syringe because she just couldn’t get the hang of it. Her high pitched cry broke my heart.
As the night wore into morning, I started to crack. ‘I know how this ends, I’ve done it before with her brother. Why am I pushing breastfeeding on her exactly?!‘ My midwife could tell I was getting disheartened so she organised for the senior midwife to look after me that morning. “We’ll get this baby feeding!” she told me confidently.
My doctor, Nikki, came in just after 9am, not long after my new midwife had come to meet me and prepare me for a long day ahead of learning how to feed. She yelled at the orderly who was pushing me for my lunch order to get out of my room. She asked if anyone had come to see me about Katelyn’s head. Um, what? No. It’s just all about the feeding, all of the time.
She took my baby away to run some tests on her.
I sat there, tired, confused and on my own, waiting for Nikki to come back and tell me everything was fine, she was just a fractious feeder. Katelyn and I were going to do this! We were going to get the hang of feeding and get the hell out of hospital. We had a nice, normal life waiting for us at home.
Mike arrived just before Katelyn and Nikki did. She told us there was some fluid in Katelyn’s anterior fontanelle. That can be a sign of pressure building in the brain, which could mean there is a bleed. She ordered an ultrasound and assured us that she was probably just being overly cautious; Katelyn had an intervention-free natural delivery, everything should be fine.
Not half an hour later, the orderly arrived to take us to Xray. As we were waiting to be seen, I remember saying to Mike, “This is something I should be worried about. I’m not, though. That means this is going to be really bad, doesn’t it?”
He went quiet as he Googled ‘bleed on the brain’.
The Sonographer had never done an ultrasound on a fontanelle before, so another doctor came in to do it. And there it was, as clear as day, even to our untrained medical eyes — a seemingly massive blob on one side of the image that wasn’t there on the other side.
“Go back to your room, your doctor will be in touch.”
Casey has been waiting for us in our room while we were gone. The look on her face when we returned said it all. The phone rang. It was my doctor. “There is a bleed. Katelyn will need to be transferred to Perth for an MRI. You’ll need to get your husband to get everything ready. Are you okay?”
Casey hugs me and I burst into tears.
The Paediatrician comes to see us shortly afterwards. He explains what would happen in more detail. Jesus Christ, two hours ago my biggest ‘problem’ was a baby who couldn’t latch properly and now I’m being told my daugher has a fucking brain hemmorage?! I just don’t even…
The midwife comes and takes Katelyn away. They need to get her ready to be air lifted to Princess Margaret Hospital. She says it’s for the best that I don’t go with her; new mothers generally don’t cope too well when their one day old baby’s are getting IV lines. I can hear her screaming from down the hall.
Mum arrives just after Mike’s Dad and brother leave. We put together a plan for Mike to make the 400km trip to the city that doesn’t involve him driving down there on his own with nothing but his thoughts. It kills me on the inside seeing how much this is affecting him. I’m achieving approximately zero by being a blubbering mess, and I try to pull myself together.
My complete unravelling comes later, when we’re on the RFDS plane and no-one can hear me cry.
I got to see Liam for a few minutes before the transport team arrived to take Katelyn. She’s crying because she’s hungry but isn’t allowed food. He gives me a quick cuddle and runs away. Bless him, he’s still too young to understand what’s happening. Babies are a new thing to him, let alone ones with cords and drips all over them.
The doctor from PMH is lovely and she explains to me in detail what will happen once we arrive at the hospital. What she can’t tell me, though, is what kind or repurcussions this will have for Katelyn. They won’t know the full extent of the damage until she has an MRI. The word ‘surgery’ is mentioned a few times. Best case, she’ll have some learning disabilities in later life. Best case…
Katelyn sleeps for the entire three hour trip.
We arrive at the hospital and they tell me they have a room for both Mike and I to stay in during Katelyn’s time in the Neonatal Critical Care Unit. Finally, I can call my husband with some good news.
He arrives at the hospital at around 11pm that night, just in time to witness the doctor place electrode needles into our daughter’s scalp for the Brainz machine. They need to make sure she’s not having seizures and this is the best way to do that until she can have a proper EEG. More high pitched crying and our hearts break even more. We sleep for probably three hours max.
Mum and Dad come to visit first thing in the morning. It’s Dad’s first time seeing Katelyn and she is still hooked up to the Brainz machine, has a drip, a feeding tube in preparation for the tests later that day and a plethora of nodes on her that are monitoring her vitals. They don’t stay long, and instead they get me to give them a list of things I need. It seems that Mike repacked my hospital bag and most of the stuff I actually need has been left at home.
After they leave the doctors come for their rounds. Katelyn is doing well, all things considered. They are satisfied that there haven’t been any seizures and she’s allowed to come off the Brainz machine. The MRI and EEG are scheduled for that afternoon. They can’t tell us any more information until then.
The EEG also comes up clear, so Katelyn is moved from the main area and into a shared room with two premmie babies and a boy with a heart condition. This is where the Neurologist finds us.
He tells us that the MRI showed that the majority of the bleed was on the outside of the brain, but unfortunately there was some bleeding on the inside as well.
It has happened in the area that controls visual and sensory input. The blood vessels look to be fine and the bleed has stopped, so she won’t need surgery at this stage.
They don’t know what has caused the bleed, especially since she was a natural birth. She’s just been very unlucky, which is not a bad thing.
It could have been so much worse.
He tests her eyes to see if they move together. They do. A good sign, he says. He’d like to keep her in Perth for another few days at least, maybe a week, just to be sure that everything has calmed down.
To say we are feeling relieved is a huge understatement.
I work with a lactation consultant for the rest of Katelyn’s time in hospital to try and get her to feed. She probably has the worst headache known to man, and here we are, making mealtime something akin to torture. On the last day Mike says to me, only half-jokingly, “Stop trying to shove your tit in our daughter’s mouth! Clearly she prefers the bottle.”
Later on the lactation consultant also admits defeat; Katelyn has an unusually high ridge in the back of her mouth. Perhaps when she’s a bit older she will attach, but in the meantime bottle feeding is probably for the best. I continue to double pump in the expressing room; a horrible place filled with weeping mothers and awkward small talk as we sit there, exposed and emotional.
We are discharged on the Monday, five days after Katelyn was born. I am loaded up with paperwork for appointments that will need to be scheduled, two commercial plane tickets home and a medical certificate to state that Katelyn is okay to fly. My brother — the only person who has not been able to see her (Only parents and grandparents were allowed to visit) meets me at the airport and gets to have some serious cuddle time with his niece.
I am so tired and so ecstatic to be going home that I feel drunk.
The official diagnosis is “Left Parietal Occipital bleed with Subarachnoid Haemorrhage“. That shit straight up kills 35% of adults who get it, and another 15% will die in the following days or weeks from an aneurysm.
We have an MRI scheduled for next Friday, which will tell us if the clot is dissolving (Paediatrician was confident it should be, as her fontanelle is no longer bulging), and if its presence has blocked blood supply to other parts of the brain. Some degree of brain damage is common among survivors.
We have since seen Nikki, who I honestly cannot find the words to thank. She told me that she called the hospital a few times to see how we were going. The doctor there applauded her for spotting the problem; had she just dismissed it all as a fussy baby and sent us home, this story could have had a very different ending.
Nikki also mentioned how lucky we were that Katelyn didn’t get stuck. Had she needed to use the vaccum — something that usually causes bleeds — on a baby that already had one… Bah, I need to stop thinking about what ifs.
Katelyn has seen the Paediatrician as well, who was very happy to see that most of her reflexes seem normal for this stage of her development. There was one, her right arm, that didn’t do what it was supposed to, but he’s hopeful that it was because she was having a hunger meltdown at the time and not because of any damage. We will see him again at seven weeks so he can re-test her.
I haven’t really had much time to think about how this has affected me, and Nikki caught me off-guard when she asked me how I was coping with it all.
“Fine. If anything, I just feel incredibly lucky to have her.”
What I didn’t say, is that I also feel incredibly blessed that I have such an amazing support network: Mum, Dad and Casey in particular made such a traumatic and stressful time just that little bit more bearable.
That I feel grateful for extended family and friends who all sent us love and well wishes.
Thankful to live in a country with brilliant doctors and a health system that didn’t just leave us stranded.
I definitely didn’t mention that, lately, I also feel stabs of anger mixed in with all the thankfulness and the feel-good vibes. What the hell did she do wrong to deserve this?
Mostly, though, I’m actually just scared. Scared that it will happen again. Scared that we won’t be so lucky next time. Scared that I will lose our wonderful baby girl to something that we are completely powerless to stop.
Miss Katelyn really is the luckiest unlucky baby there is. I hope her luck never runs out.