My Story
I found out I was pregnant two days before Christmas 2008. I was surprised as I hadn’t stopped bleeding in three months. I’d eventually made an appointment with my General Practitioner (GP) convinced my polycystic ovarian syndrome was back and my hormones needed measuring. The news that I was eight weeks pregnant convinced me that I should have paid closer attention during in my fourth year when I was learning Obstetrics and Gynaecology. I found out later that bleeding in the first trimester can be a risk factor for a premature delivery. Each month of my pregnancy was worse than the last. I would await my new weird symptom of pregnancy with dread. It would be horrendous but a “normal” symptom of pregnancy. The bleeding eventually stopped in month three. The morning sickness started shortly after I discovered I was pregnant. Month four was all about the itching. I had such intense itching that I used to scrub my skin with a nailbrush in the shower twice daily.
It was so satisfying and after investigation it was pronounced normal skin sensitivity during pregnancy. Month five I started getting a bump and my back problems started. Month six I felt like someone was cracking my ribs apart.
Month seven I gave birth. The day started like any other. A new weird symptom that I was sure once I reported to my doctor would be yet another “normal” symptom of pregnancy. So I didn’t bother. I had lower abdominal pain. It started around seven in the morning and I arrived at my scheduled GP appointment looking a bit more tired than usual. My doctor is excellent and she noticed I looked less than chipper. I assured her I was fine and my lower abdominal pain was probably normal and nothing for anyone to get fussed about. I’m a doctor too so there was no way I was going to be wasting another colleague’s valuable time. She asked if I wanted her to examine me. Again I reassured her that there was no need and I was fine. I smiled and thought, “Great! Yet another thing to bear with.”
I was supposed to go to work after the appointment but I just didn’t feel great. Not unwell but not well either. So uncharacteristically I called my boss and asked for the afternoon off on account of not feeling well. He was sympathetic and hoped I got better soon and would see me in the morning. The pain came and went. It wasn’t regular. I figured the textbooks lied and Braxton Hicks contractions were not painless. Yippee and welcome to my body annoying symptom of pregnancy for month seven! The fact that I found it easier to bear the pain when I was on all fours on my living room floor didn’t strike me as bizarre. Labour couldn’t possibly be happening. I was thirty-one weeks and a day pregnant. Frankly, it didn’t even cross my mind. I recall getting something in my email a few days before from one of those popular baby websites about “How to Recognize the First Signs of Premature Labour”. I’d pressed delete without reading it and quickly and efficiently restored order to my crowded inbox.
My husband arrived home around midday. He had the day off and had been running around in the morning. He eventually convinced me that I wasn’t wasting anyone’s time by attending the hospital and asking my equally excellent obstetrician to wave hello in my direction and take a look. It was half past four in the afternoon at this stage. Our daughter arrived just five hours later. I won’t lie to you. I wasn’t anywhere near ready to become a mother. I certainly hadn’t entertained the possibility that my child might not be healthy on arrival. Her nursery was a spare bedroom at that point and I’d had my first antenatal class two days before. It was all wrong and I was responsible. I shouldn’t have taken it all for granted.
My daughter weighed 1.59kg and fit only slightly larger than my husband’s hand. I saw a nose before she vanished. I didn’t see her again until the next morning. I didn’t get to hold her. When we were reunited she was in a neonatal intensive care unit (NICU) with wires, monitors, alarms, ventilators and a full time one-to-one nurse. He was a gentleman. I was numb but my body hurt. There were stitches where I used to sit comfortably. I was as pale as a sheet. My feet looked like an elephant’s. She didn’t look like a human let alone a baby. She looked fragile. I didn’t know she wasn’t. Such a strong determined soul in such a tiny body. I was the fragile one. I shattered that day. Something in me broke into a thousand pieces and remained suspended in time.
It remained suspended because there was no time or space for me. I didn’t matter anymore. It was all about this tiny person now who was fighting for her life.
Through the highs and lows of the next seven and a half weeks we travelled and she finally came home. During her admission she had been through many of the usual premature baby issues including bilateral intraventricular haemorrhages, neonatal jaundice, apnoea of prematurity and necrotizing enterocolitis (NEC). However, she did finally get discharged. I was terrified. I didn’t know what to do. I’d never taken care of a baby before. I also don’t think I had any particular love for her at that point in time. I didn’t really know her. I didn’t feel like she needed me. I thought she needed the nurses and doctors. I hadn’t given her a thing so far except my rather meager supply of breast milk. I didn’t tell anyone though. It was a shameful secret.
Proofs of my self-perceived failings were exemplified in the fact that she needed to be readmitted after just four weeks in my care. She had developed a post-NEC stricture. I’m a doctor and I hadn’t figured it out. She wasn’t gaining weight. Her bowel habit had changed dramatically from six to eight times a day to complete constipation lasting two to three days at a time requiring Emergency Department attendances and suppositories associated with vomiting. The vomiting was not a small amount. It wasn’t reflux as I was being told by both the discharge and the community nurses. It was a horrible heaving vomiting after every single bottle followed by contentment once she’d expelled all (and I mean all) the milk I’d painstaking spent over an hour getting into her. Then she’d sleep. She slept all day and all night every day.
I religiously woke her every four hours only to repeat the charade of feeding her and then taking her to the bathroom sink waiting for the vomiting to start. In my demoralized state I hadn’t managed to explain all of these symptoms over the phone to either nurse or the kind dietician in a manner that anyone took seriously. I just seemed to be the neurotic mother that wasn’t coping very well. She was being weighed thrice weekly by the time the obstruction showed itself for all the world to see in the grass green colour of the vomit. I took her and the vomit sample to the nearest children’s hospital. A gracious taxi driver took me after the four lads who’d booked him gave up their taxi to me. She arrived within fifteen minutes and just before she became unresponsive. She’d just given me her first smile that evening before the green vomit spewed. It was months before I saw her smile again without panicking thinking that she was going to die. It ruined that first smile for me.
As I watched the monitors and the doctors try to resuscitate my daughter, I realized I hadn’t fought for my child. I realized I’d become so demoralized and uncertain in my own judgment that I’d allowed myself to be bullied into following dangerous advice and stop being my daughter’s advocate. My child nearly died and I’d dropped the ball.
She was discharged a month later following two surgeries that finally culminated in a loop ileostomy. I felt like I had somehow broken my child. I’d been given a perfect human being and I’d broken her. In the background of all of this horror, the hospital experience was worse still. The nursing staff made it as difficult as they knew how for me to breastfeed and for my parents to visit their only grandchild even when she was dying. They misrepresented my husband and I on numerous occasions to doctors, anaesthetists and radiology staff. The maternity hospital staff was far more considerate than the children’s hospital nursing staff and for the life of me until today I cannot understand why. Why were we treated so poorly? Why was it that my child needed breast milk in the maternity hospital but in the children’s hospital every single brand, flavour, combination and permutation of formula was being stridently offered?
Fortunately or unfortunately, I had a medical background so there was no fooling me any more. What happens to parents who are not doctors? That stoma was life saving and life stealing. I knew she needed it. I knew it was vital to her but I hated it. I couldn’t change the bags single-handedly. I privately employed additional help five mornings a week to assist me with this task. I spoke to my excellent community nurse when I experienced complications such as skin breakdown around the stoma site. She kindly got me in touch with a stoma nurse. The stoma nurse was not employed in the hospital my daughter had her surgery but she helped us on the phone anyway with practical advice. Our pharmacist was equally wonderful. She helped us get a Drug Payment Scheme (DPS) card. I’d never heard of them before. It reduced some of the financial burdens we were bearing.
However, despite her efficiency and kindness I couldn’t get all the equipment I needed to change that bag through the community pharmacy. There were additional items I required that were only made available to hospitals. It made emptying my daughter’s stoma bag very difficult. I had to tip her upside down every time I wanted to empty her bag as a result. It prevented us from going out in public. If that bag leaked I couldn’t change it by myself. So we stayed at home. Additionally we had an appointment in one or another hospital at least twice weekly every week of my daughter’s first year barring two weeks over Christmas. These appointments revolved between the Neonatologist, Paediatric Surgeon, Ophthalmologist, Audiologist, Physiotherapist, Dietician and Community Nurse. So what was the point in trying to meet people anyway? Additionally, no one played with us at baby groups because we were different. She was so tiny for so long that people just stared and retreated. It was lonely.
Eventually the day arrived that the stoma was reversed. I’d geared myself up for the admission and I still burst into tears when we were finally in our room alone. It was the rainbow cot that she’d spent so much time in on the previous admission that undid me. I was determined not to leave her side this time. I wasn’t going to let the nurses bully me. I was going to be at her side and get her out of there as fast as possible.
Eventually the day arrived that the stoma was reversed. I’d geared myself up for the admission and I still burst into tears when we were finally in our room alone. It was the rainbow cot that she’d spent so much time in on the previous admission that undid me. I was determined not to leave her side this time. I wasn’t going to let the nurses bully me. I was going to be at her side and get her out of there as fast as possible.
We would go home with as little trauma as possible. Thankfully this happened and we were discharged within the week. In fact, I managed to pack ourselves, all our things and flag a taxi before the consultant had finished his ward round. It was a brilliant day! We were free; nothing was going to hold us back anymore. We went out and started to live. We attended baby groups. We went to the park. We spoke to other parents and babies. We made friends. We stopped going to the pharmacy every month with a grocery list-like prescription. We let our supply of stoma bags go low and didn’t panic. It was joyous!
Then the further sequelae of everything my daughter had endured started to emerge. Her hearing ability was questionable within the first year. She still wasn’t speaking up to the third year. I wasn’t sure if she was just delayed or if she couldn’t actually hear me. I suspected the latter but hoped for the former. I knew all about gentamicin and it’s consequences. Hearing tests were impossible to obtain. Every single hearing test she was supposed to undergo was done at the wrong age simply on account of the waiting list that made interpretation always questionable. She was put on a waiting list for an appointment. It eventually arrived when she was four years old.
Thankfully I gave up working within the public healthcare system two years earlier and had gotten her a private appointment in the same hospital with another ENT surgeon. Private healthcare was our only option when it came to her hearing assessments and treatment. The only thing I hadn’t managed to get through the private route was Speech and Language. I didn’t know of any places that would treat her so we were stuck. The Speech and Language therapy became a sick joke eventually. I was advised to go through the Disability Act to access Speech and Language more expediently by our community support. It was a convoluted and ultimately flawed process. I had to jump through all kinds of hoops to access it only to be finally told by the psychologist that my child was of borderline normal IQ and possibly on the autistic spectrum. Additionally an HSE secretary told me that a report in no way guaranteed access to services. It has taken the passage of time for that particular theory to be thoroughly debunked. However at the time I was thrown back into my personal hell and agonized over how I could have missed the fact that my child needed so much more help than I’d thought. Turns out my daughter are bright and is currently enrolled in a school for gifted children. So there.
I’m not glossing over the emotional rollercoaster my husband and I went through because it still makes me angry. My daughter is now five years old and the journey from there to where we are now wasn’t pretty. I don’t want to pretend that it was ok. That what happened to her was ok. It wasn’t. Some of it was no one’s fault. Some of it very clearly was. Much of the trauma couldn’t have been avoided. Some of it certainly could have been handled better. If my not glossing over it helps another person then my job is done.
I would like to finish with a few words on my daughter. She is a fighter and a beautiful child both inside and out. I’m completely besotted with her. In the words of my child, babies choose their own birthdays. I like to believe they also choose their own parents and they do so wisely by choosing parents who learn to fight on their behalf and advocate for them just as hard as they have done to hold onto life.