“My husband and I got married in January 2015 in the town we have spent most of our lives in, Townsville, North Queensland. We were 19 and 20, and even though felt that I was ready to have children, Sean was not. We put aside the discussion of having children until we had grown up a little more. But, in December of 2016, three days after Christmas, we got that positive pregnancy test. Sean was in shock and couldn’t even utter the words ‘pregnancy’ or ‘baby’. Me on the other hand, I was bouncing off the walls with excitement. I decided to go into my pregnancy with a ‘go with the flow’ attitude, and as the weeks went by Sean came around and got use to the idea of having a baby on the way. We decided to receive our pregnancy care with the Birth Centre as I wanted a natural birth, although I was not opposed to medication if I needed it or any procedures that were necessary.
I had a relatively smooth pregnancy with morning sickness, low iron, an iron infusion, pubic symphysis pain, and the normal pregnancy woes. I was just ecstatic to be pregnant and so thankful that I’d been blessed enough to have the experience of carrying a baby. The midwife that was assigned to me was good at her job I’m sure, but I did not feel totally confident with her. I felt that I was always asking ‘silly’ questions and I felt judged by her. It wasn’t until 36 weeks that I started to struggle, and I let the weight of everything get to me. My baby was measuring big, roughly three weeks ahead, and my pubic symphysis pain was so bad I had trouble walking or moving. I discussed with my midwife the possibility of being induced and she referred me to see an obstetrician. No matter how many doctors, specialists and midwives I spoke to, they all said an induction was possible in my case, but I’m better off using medication to deal with the pain and waiting out the rest of my pregnancy. I had never felt so let down and alone, I felt like I wasn’t a good enough mother because I couldn’t handle pain and discomfort for the sake of carrying my baby until he was ready to be born. I thought that I would be heard by these medical professionals and be supported by them, but instead I just felt that I was too weak to do what my body was made to do. It all became too much emotionally, and the doctors decided to induce me the day before my due date. My midwife who had been with me my entire pregnancy was not 100% supportive of our decision to be induced so she was not present at the birth. I instead had midwives I had never met, including a student midwife and a student doctor.
I was so excited to meet our little one and was over the moon when I was induced on the 30th August 2017, the day that would become life changing in so many ways. The doctor broke my waters at about 8 a.m. and I started having mild contractions. At about 10 a.m. my doctor came in and said that while I was progressing well on my own, they had a full ward and wanted to speed my labour up. Not knowing that I had a choice to say no (I figured it was just part of the induction process), we went ahead with the synthetic hormone drip, and by 3:30 p.m. I was in active labour. Our little boy, Nathaniel Colin Bill (or Nate as he’s called) was born at 6:23 p.m., after 20 minutes of pushing. He was a big 9-pound 3-ounce chubby boy with beautiful blue eyes. Within minutes of him being put on my chest, the midwife noticed he was making a funny noise while breathing. She said she needed to take Nate out to see a doctor, my husband followed them while I laid there waiting for the placenta. Sean soon came back into the room and handing me our baby said Nate was perfectly fine. As soon as the placenta was delivered, I haemorrhaged, I lost 1.3L of blood. The emergency buzzer was pushed and suddenly my room was filled with people. It took them roughly 2 hours to stabilise me, poke me with what felt like a million needles, stitch me up, and then they all left, blood everywhere, me so pale and weak I couldn’t hold my baby without help, and my husband traumatised by what had just happened. At about 11p.m. a new midwife came on shift and said I needed to shower (mind you I could hardly move let alone shower myself) so I could be taken up to the maternity ward for the night. Once we got settled in our new room, they told my husband to leave as it was well and truely past visiting hours. I was terrified of being by myself with a newborn, feeling so sore I couldn’t move, cannulas in both arms which made it difficult to breastfeed, a catheter which was incredibly uncomfortable (I later found out my episiotomy was stitch crooked so I had extra pain and discomfort), and then being utterly exhausted after just giving birth. Sean left for the night promising he’d be back the moment visiting hours started the next morning. During the night I had issues latching Nate for feeds and he had done a big poo, but I was too sore and tired to get out of bed to reach the nappies and wipes. I buzzed for a midwife for help, she stuck her head in the door and asked what I needed, when I said I needed help with breastfeeding and nappy changes she replied with ‘it’s something I’ll have to work out myself’. So, I dragged myself out of bed, changed Nate and fed him. I felt that I was letting my baby down because I thought I should have known how to feed him already and have the energy to change him and care for him. I figured I was just feeling sorry for myself and had to toughen up.
We went home two days later and settled into our new routine, although the pain and discomfort after birth and with my milk coming in was not very pleasant. When Nate was 2.5 weeks old, I decided to go camping with my parents, sisters, grandparents and family friends, while Sean had to work. That night while at dinner I felt myself loose a blood clot and went to the bathroom where I found a clot about the size of a golf ball, I figured it was normal, I’d just had a baby after all. Two hours later, while sitting in my camping chair rocking my screaming baby, I felt a gush of blood, I passed Nate to my aunt and stood up to go to the communal bathroom. Suddenly there was another gush of blood, my aunt passed Nate to my dad and she and my 18-year-old sister walked me to the bathroom. The whole way I was leaving a trail of blood. I stood in the shower stall and stripped my pants off and saw the sheer amount of blood and clots. My aunt called an ambulance as my mom, who had been on a walk, came rushing over. I was loaded up in the ambulance with my sister and was told Nate couldn’t come with me. My mom and Aunt followed up in the car with Nate. I was taken to the trauma room of a small hospital, there a student doctor checked me out, using shaky and inexperienced hands pulled clot after clotting out of me. I wanted to cry as I laid there without anyone I knew, feeling sore (my stitches still hadn’t healed), exposed and uncomfortable as this doctor was mentored through what she should be doing and what she was doing wrong. Once the bleeding stopped, they estimated that I lost 1.2L of blood. I was transferred to a room for the night and started IV antibiotics. My mom stayed with me the night to help with Nate as Sean was a 3-hour drive away and had only just gone back to work after Nate’s birth. During the night I breastfed Nate only to find him breaking out in hives. It turns out he has a sever allergy to penicillin. That was the first time I had to feed him formula. I wasn’t offered a breast pump or even advice on what I should do in order to keep my milk supply up. From then on Nate had to be supplemented with formula.
The next morning, I had an ultrasound where they found retained placenta, it was borderline being too small to remove and being a remote hospital, they decided to leave it there and hope my body passed it. Nate and I were discharged the next day and my family drove us home the following day as we had a funeral to attend. We arrived at the funeral and I started to feel quite ill, I went home that afternoon and finally saw my husband after our big ordeal. Within an hour I asked Sean to take me to the hospital as I was feeling dizzy and really unwell. The doctors found that I needed further antibiotics and a D&C to remove the remaining placenta. I once again couldn’t breastfeed Nate but was pumping my milk and tipping it down the sink. I fasted for nearly two days waiting for my trip to theatre. Fasting for that long resulted in supply issue with my breastmilk and I struggled to breastfeed even more than I already was. I requested that my husband be allowed to stay with me to help with the baby and although it was against hospital rules, they allowed him to stay at night with me. But they wouldn’t supply him with a comfortable chair or bed, so he slept on the floor with a blanket and pillow that a kind nurse gave him. I eventually went to surgery and had the retained placenta removed. Surely, we could go home and be a normal family now?
I bled for three months straight, alternating from light to heavy. I went back to the doctor’s numerous times and eventually went to the ED one day when I started feeling really ill again. After an ultrasound they found calcified retained placenta and a uterus full of infection. My options were to have surgery and try to remove the calcified tissue, but risk damaging my uterus, or continue taking antibiotics and hope the calcified tissue passes on its own. We chose the surgery and it went mostly well. The surgeon couldn’t remove all the tissue without risking damage, so a little piece was left behind. This meant that I may have trouble falling pregnant again, a higher chance of miscarriage, and if I have a successful pregnancy, the new placenta is likely to adhere to the calcified tissue and cause a haemorrhage at birth. Finally, my issues were mostly fixed.
But, just a week later, at four months old, our beautiful little boy started having allergic reactions to the formula he had been on. My milk had completely dried up since the surgery, so Nate was put solely on formula for the first time. After feeding him a bottle he went pale and his eyes puffed up a little. This wasn’t totally new as he reacted like this with his vaccinations at 6 weeks and 4 months. But then he developed a rash, dark circles under his eyes, vomiting, diarrhoea, and started screaming in pain. We took him to ED where he was diagnosed with a Cow’s Milk Protein Allergy (CMPA). We were told to try a dairy free formula and he should be fine. But Nate was not fine, he had started to have reactions to everything he ate and drank, then to the smell of foods that we were cooking, and even our breath if we breathed near him. Nate was losing weight and dropped from the 97th percentile to the 8th. Sean and I took Nate to the ED countless times, he was admitted and had nasogastric tubes (NG) placed more times then we care to count. He could only tolerate water for a few days while we tried many hypoallergenic formulas until we found one that worked.
When Nate was 5.5 months old our paediatrician didn’t know what was wrong with him, so he sent us to see an allergist on the Gold Coast. There Nate was diagnosed with Hypersensitivity to food and all we would have to do was introduce new foods to him very slowly and he’ll grow out of his reactions by the time he turns one. It was so nerve racking to try new foods, never knowing if Nate was going to have a reaction. Then when he did have a reaction it was days on end of him screaming and breaking out in rashes, vomiting and having diarrhoea. We would call our doctors and paediatricians only to be told they couldn’t do anything, and we just had to keep doing whatever we could to keep him comfortable. If he got too sick, we would go to ED where Nate would have NG’s placed to sustain him until his body settled enough to tolerate food again. On top of all this Nate had laryngeal spasms, where the throat randomly spasms for up to 20 seconds, often making him choke. This was a tough time for Sean and me, although we stayed strong in our marriage, we still had arguments, and had anxieties around everything to do with Nate and the hospital. We felt very lost and had no idea what we could do to help Nate as we still didn’t have a concrete diagnosis.
We went on living our lives, introducing foods to Nate with reactions here and there, but he always had diarrhoea, and he occasionally vomited. Just after Nate’s first birthday Sean and I started talking about having another baby. We thought given my history that we would have trouble falling pregnant or even keeping a baby for a successful pregnancy. But after one cycle, we found out we were pregnant on the 24th October 2018. We were both so excited and ready for this baby to join our family. When I was 7 weeks pregnant, I woke up to find that I was bleeding. My heart sank and I kept telling Sean that we’ve lost the baby. We dropped Nate off to my sister and went to the ED. We had an ultrasound and saw that beautiful flicker of a heartbeat. We were told that we had a threatened miscarriage and have a 50% chance of the baby surviving until 12 weeks. Sean and I decided to stay positive and trust that our baby would make it. At 12 weeks our baby still had a strong heartbeat, and while we were supposed to be celebrating instead, we were in the hospital with Nate. He had picked up a nasty virus and was running 40-degree temperatures, this on top of his reactions meant for a very sick little boy. Our paediatrician couldn’t offer us any further help for Nate so went sought a second opinion. The new local allergist we saw decided Nate needed to be referred to the Children’s Hospital in Brisbane. Two months later, after much nagging on my part, the allergists receptionist called me to say that the referral had finally been sent off. Just days later I got a phone call from the Children’s Hospital saying that Nate has been classed as an urgent case and has an appointment in two weeks time in March 2019. By this stage I was 23 weeks pregnant. Just days before Nate’s appointment both he and I got sick with a nasty virus and the hospital said we were both too sick to fly and will have to reschedule Nates appointment. The only problem being there was at least a month wait to get another appointment, by which time I will be too pregnant to fly, and Sean doesn’t have enough leave from work to go. By some miracle we got an appointment 2 days before I reached 28 weeks.
Nate and I flew to Brisbane and spent the day getting numerous tests done and going over every reaction he’s had. That day Nate was diagnosed with an IgE mediated allergy to penicillin, a Non-IgE allergy to dairy, gut hypersensitivity, and FPIES (food protein induced enterocolitis syndrome) to rice and oats. FPIES is a type of allergy that affects the gut. It results in vomiting and diarrhoea as its main symptoms, but has many variables depending on the child. Most children outgrow FPIES by their 2nd birthday, others by their 3rd, and a rare few don’t outgrow it at all. There is no cure for FPIES it’s just a matter of avoiding the trigger foods and waiting until its outgrown. Nate when exposed to a food he can’t tolerate (for example rice or oats) will have an initial reaction to that food but will then continue to react to everything he consumes for up to a week. The gut hypersensitivity means that Nate can’t tolerate most foods. It’s easier to list the foods Nate can tolerate rather then the foods he can’t. When exposed to a trigger food Nate loses weight rapidly, his intestines can’t absorb the nutrients he needs while having a reaction, this also means he dehydrates very quickly.
Once we returned home and settled into Nate’s new diet routine, I had my 28-week pregnancy check up, it was my last catch up with my midwife before she went away for 8 weeks. My pelvic pain was in full force and I was anaemic. I had been sick the entire pregnancy and was feeling a bit sorry for myself. I had decided that after Nate’s pregnancy I was determined to stay positive and enjoy every part of my pregnancy and be grateful for the healthy baby I was growing, but I had my moments of struggling to stay positive. At my check up the midwife noticed that the baby was measuring 3 weeks bigger than he should be. The big size, plus my history of haemorrhage meant I had an increased chance of having another haemorrhage during birth. It was decided that I would be induced by 40 weeks at the latest to try to avoid having another big baby. I needed an iron infusion at 32 weeks due to anaemia and to prepare for a potential future haemorrhage. While my main midwife, M, was away I met my back up midwife, S. S was was going to be on call for me just incase I went into labour while my original midwife was still away.
When I was 37 weeks pregnant Nate had been having reactions for a few days. He was vomiting and having crazy amounts of diarrhoea. He was due to go to day care on a Wednesday, so I thought I’d see if he was well enough to go when he woke up. He seemed okay albeit a bit tired, so I took him to day care. As I was unpacking his bag Nate was standing beside me crying, as he normally did when he knew I was about to leave him. Next thing I know his eyes rolled to the back of his head and he passed out. I picked him up as he regained consciousness and took to our GP down the road. From there we were sent to the hospital where we found that Nate’s blood sugar levels had dropped to 2.3 and he had ketones and was dehydrated. We along with Nate’s paediatric team decided to put him on a hypoallergenic formula only diet to see if that helped his body cope when having a reaction. Turns out this was the best decision we could have made. Within 5 days Nate was back to normal and we could start introducing food again. We now go to a formula only diet every time he has a bad reaction.
At 38 weeks and 4 days, 3 days before my scheduled induction, I started having a sharp pain on the left size of my giant belly at 5pm. At 10pm that night I called S and she sent me to the hospital due the the amount of pain I was in. I was having mild contractions, but they suspected a kidney infection was causing the pain. We stayed the night and I sent Sean home for a sleep at 5am. I had my cervix checked for dilatation at 5:45am and surprisingly I was 4cm. 10 seconds later, my waters broke. I called Sean back to the hospital and arranged for my parents to look after Nate. At 1pm I was in active labour and in that moment, I realised just how anxious I was, I was terrified of having another tough birth and even more scared because of how I felt after Nate’s birth. I struggled to stay positive. I was even more scared as I didn’t have my midwife M with me, (although S was absolutely brilliant). The contractions were steam rolling me and I have never felt that I couldn’t do something until that moment. This birth was so much harder than my first. I started pushing at about 3:20, and our second son, Orlando Charlie Bill (Ollie) was born at 3:42pm on the 25thJune 2019. He weighed 8 pound and 9 ounces. Ollie was put on my chest and this time I had a beautiful brown eyed baby starring up at me. I had needed another episiotomy and as the Midwife went to stitch me up, I lost a huge blood clot. Then I started haemorrhaging. 1.4L this time. I was once again surrounded my doctors and midwives, poked with needles and pumped with medication. 1.5 hours later I was stable, and could finally breast feed my baby. Unfortunately, both Orlando and I spiked fevers and he was taken to special care. I was too weak and exhausted to even notice that Sean had left the room with Ollie. In the NICU it was found that Ollie was also jaundice and needed to be on lights for 2 days.
After Ollie’s birth I felt 100 times better than I did after Nates. I felt better in myself, more confident as a mother, and our family felt complete. I put this down to my growth in myself, our Christian faith, the support I had from my incredible midwives, and of course my husband who has been with me every step of the way. My original midwife, M, arrived back in Townsville hours after Orlando’s birth, she was at the hospital first thing the next morning to check in on us. After two days Ollie and I went home and began life as a family of four. Sean and I were feeling quietly confident that Nate was doing better as he hadn’t had a reaction in weeks. He was due to be admitted to the hospital in a few weeks times to start the FPIES challenges. Where they give him the foods, he’s allergic to to determine if he’s outgrown the allergy. At 3 weeks old Ollie wasn’t gaining weight or feeding right. We were referred to a dentist who said Ollie had a tongue and lip tie which would explain his feeding issues. Once that was corrected, we assumed he would start gaining weight and feeding normally. When Ollie was 5 weeks old, I lost a blood clot, I called M and she said given my history I should head to the hospital. I had an ultrasound which showed calcified tissue, but it could not be determined if it was from Nate’s placenta or Ollie’s. I was sent home the next day with antibiotics and told if I had random bleeding to go back and get checked out again. At Ollie’s at 7 weeks check up with the GP he had dropped from the 97th percentile to the 75th for growth. He had started vomiting and having tummy pains. We were sent to the hospital where he was diagnosed with Cows Milk Protein Allergy (CMPA) and a soy allergy. As I was breast feeding, I had to cut these things out of my diet. I am determined to breastfeed Ollie for as long as I can as I think it will be better for him during his reactions and I love the bond I have with him during his feeds. Ollie needed a cannula and an ultrasound, and I once again found myself at the hospital restraining my baby while he was poked and prodded.
So now I have a nearly 2-year-old with multiple chronic allergies and an 8-week-old heading in the same direction. Despite everything he’s been through Nate is a very happy little boy. His resilience and courage astound me everyday. I couldn’t imagine going through what he does and I’m sure he will be a great support for his little brother as he goes through his own allergy journey. I never thought I’d be the mom who has kids with health issues. Whilst my journey has been the hardest of my life it has also been the most empowering. There is nothing worse than having to hold your baby down while he’s poked with needles, or having tubes put up his nose and into his stomach, but it’s my job as a mom to be there when they need a cuddle, the person they reach for and seek comfort from. Sean fits the role perfectly of being their dad, he is always there for our boys. Being a mom to two boys with chronic allergies has taught me to be strong for them, to put aside my own needs and comforts, give up the foods that I like or sleep on uncomfortable hospital chairs. I would do it every day for them if I had to. I’m not going to lie, it’s hard, REALLY hard. They scream and cry, they can’t eat like other kids can, they will miss out on some things in life, we deal with a lot of vomit and diarrhoea, and I’m sure there will be more times that I have to hold them down for one procedure or another. BUT they will always know how loved they are and that their mom and dad would do anything to help them. We are not victims and we don’t want people to feel sorry for us or our boys, we just want to spread the word of chronic allergies and hopefully we can be an encouragement to other families going through something similar. I hope that my journey into motherhood can help other moms to trust their instincts and to strive for what they want in their pregnancies and births. Although I sometimes wish this wasn’t my story, I am thankful for the lessons I’ve learnt and the person I’ve grown to be. But most of all I’m thankful for my incredible husband, our family and friends, and my two beautiful boys.”
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