Carla’s Story – Our NICU Experience

I had a healthy pregnancy with my son but at my 37 week appointment, my OB noticed my fundal measurement was measuring closer to 33 weeks, I was sent for a CTG and ultrasound which revealed my son was on the 6th percentile and he was diagnosed with asymmetrical IUGR. Due to the gestation, the plan from the OB was to induce and get him out. I agreed as I thought I was full term and everything would be OK. I’m from Australia, my husband was in Scotland for work at the time, so I had to wake him up and get him to book a flight to return. He had only arrived 24 hrs prior, so double jetlag… So I got myself prepared and went into hospital the next day with my SIL who was backup labour person.

I was given a dose of the gel at 11am and just sat around the birthing suite, nothing happened. Another dose at night, nothing happened, my husband arrived at midnight, and we tried to get some sleep, a few hours later we woke, I was having mild contractions and was given another dose of gel. By lunchtime that next day, 24 hours in, I was 1/2 cm dilated. I was terrified of epidurals and c-sections and didn’t want one, so my OB broke my water which hurt but she talked me through it, and we hoped this would make my cervix cooperate. It didn’t. I was by now in ‘active labour’ with 1 min contractions every 3 mins, but I was still 1/2 cm. So my OB gave me two options, the first was epidural and syntocinin drip (I couldn’t stand or roll on the fit ball by now anymore, it was now 32 hours). Or c-section. I opted for epidural and the drip. I was scared but they are all very gentle. I was shaking like crazy with my jaw and teeth chattering but I was calm. Within 3 hours I was 4cm, then 20 mins later I was 10cm. It was a bit of a shock, even the OB and midwife were a bit surprised. They rushed around getting organised and told me to push.

I could feel contractions through the epidural on one side. They couldn’t feel anything nor get a heart rate from my son, so although I was pushing well, he had his head turned and his chin was preventing him from coming out. Then there was meconium in the waters, so the OB decided I needed help with the vacuum and an episiotomy. That was pretty devastating but in the moment I was calm, so were they and we knew he needed to be out. he came out screaming, at 8.37pm, after 36 hours of labour, he was long and head was normal size, but he was skin and bones. They felt he was OK, apgar of 9 & 9. But within 20 mins he was turning blue and he was rushed to the special care nursery (SCN) to be resuscitated and worked on. By now we had a different midwife who was really terrible, she didn’t really help in terms of info from the SCN. She eventually agreed to take hubby up and he came back white as a ghost. Then I demanded to go in a wheelchair which she sort of fought against. I went up in extreme pain with the catheter in etc and I was absolutely shocked by our little boy, he was facing away in the isolette just grunting and struggling to breathe.

The paediatrician was a bit cold and obviously exhausted, but he said he would monitor bub hourly and might decide to transfer him. So we went back to our suite to try and sleep a bit but the midwife had to check on me every 15 mins so obviously I didn’t sleep really at all. Poor hubby was so jetlagged. They woke us up at 5am and told us bub was being transferred, so we went to SCN and met the special ambulance people. I asked if we should go and was told he would probably only be at other hospital for less than a day, so it wouldn’t make sense to ‘check out’ of my private hospital to go to the public hospital. This was the first major mistake in all of this because we should have been told to go with bub. We went back to our room and tried to sleep, our parents came and were shocked bub wasn’t there, and we kept drifting off to sleep so they left. Then eventually we woke up around 4pm and decided to go see bub at another hospital 30 mins away. We arrived, with me limping in pain from episiotomy, and walked into yet another SCN, no idea what our son looked like, we hadn’t named him yet. The nurses came up and knew immediately who we were.

They took us to our boy who was screaming and fighting the CPAP machine. They were trying to calm him but nothing was working so he wasn’t getting oxygen or pressure he needed. The mask didn’t fit his face and looked so uncomfortable. Eventually the nurse decided I should hold him, which I did for two hours with cords and tubes and stuff everywhere, but he calmed down and fell asleep. It was the best decision, even though I think the nurse got in trouble as it was against protocol. Eventually we had to leave around midnight as they didn’t have a bed and we were so tired. We went back to the birthing hospital and slept. We woke at 8am to the sound of my phone, the nurse on duty with our bub was worried as he was deteriorating, and she wanted us to come. So, we pushed and pushed the birthing hospital to discharge us but it took HOURS.

Eventually we were out, and we drove straight to the other hospital. By the time we got there, he’d improved a bit, but over the afternoon, it was hour by hour, worse then better etc. He was on 50% oxygen, pressure of 8 in the CPAP and he was still desating to 80% (actually when I thought about it more, it was in the 50-60s at times too) which is badddddd. Eventually at 5am they decided he had to go to the highest-level hospital. The special ambulance people arrived, with the same doctor as before which was nice, and she said he had to be intubated and given artificial surfactant as his lungs were severely underdeveloped. I was questioned by consultants about my dates and why he’d been induced (keeping in mind my OB was on a weekend off now and was not contacted for some stupid reason I do not understand). So he went to the next hospital 1 hour away, and we drove there too, completely bewildered. Arriving at the state’s children’s hospital and going to the NICU was horrific. It’s the last place you want to go to see your child. We arrived and again they knew immediately who we were. We went to our son who was in a large room with equipment everywhere. He was intubated and had one on one care now from a trained NICU nurse, he was straight outside the consultant’s office area, due to being so critical. We didn’t know what was happening, no one really could explain why a 37 week baby was SO sick. Eventually two days later he was taken off the intubation, which is effectively a coma, and put back on CPAP. They then began to deal with the severe jaundice. One of the hundred of blood tests he had from his heels (which remain scarred to this day) revealed an infection, he had been on antibiotics since 2 hours old, but then he was diagnosed with bacterial meningitis. So then not only we were facing time needed to get him breathing but also to deal with the infection which requires 3 weeks of IV antibiotics in hospital.

All this time I am pumping milk every two hours, so tired and stressed, but managing to make some. About day 5 he started to have some milk in the NG tube and he took to it so well, they were amazed. At day 7 he was able to come off CPAP and all oxygen and was monitored for a few days before we could remove all the tubes and wires. It was so scary being without all the beeps and monitors. We learnt to read all the numbers and knew what was good etc. By day 10 I could try breastfeeding. He fell asleep constantly and was so tiny, he was 2.4 kg born, and was hard to hold. But I knew this was the one thing I could do, so I just persisted. I sat by his bed every day until he came home at 4 weeks of age. By then he was 3.1kg and still looked grey and a bit sick but completely different to at birth. He was smaller than most newborns but a month old. Initially he seemed fine, but after a few weeks, he started coughing and gasping in his sleep, and then screaming during and after feeds. Eventually after being sent away many times, a paediatrician diagnosed him with severe reflux disease and food allergies and I was put on an elimination diet and he was put on medication. But it took months for it to have any effect and he was waking every 30 mins screaming like he was being attacked. It was horrific. We went to the ED so many times but we were turned away.

Over the months and years that have followed, he has added many more diagnoses including obstructive sleep apnea, enlarged adenoids, chronic ear infections, asthma, slow transit constipation, and he is basically allergic to all foods, everything sets off his digestive system and causes pain. Three months ago he was diagnosed with autism. So things began to make more sense, why so much screaming, meltdowns when we went anywhere, waking every hour until recently. Finally we put him on melatonin and he’s begun to sleep most the night, waking once maybe, but it’s so much easier and he is calmer and can go back to sleep. Until he was 18 months we alternated sleeping upright in a recliner armchair as he couldn’t not lie down to sleep. Now I’m 20 weeks with my second and we still don’t know why our son developed IUGR and had poor growth, we don’t know if something happened to me, but we do know my placenta was small and crappy.

This time, everything is going OK so far and family and friends think it’s all OK, but they don’t understand that IUGR (late onset) happens after 28 weeks. So essentially until 28 weeks comes and goes, and we have regular scans, we really can’t be sure everything will be OK. I want nothing more than a full term, spontaneous natural birth but I can’t be in denial that it will happen as once you have one IUGR baby, you have a 20% risk of it happening again. It’s not a huge risk, but its there. Plus I’m still dealing with my son’s health, he is having more tests soon to test for Crohns disease. He has weekly therapy, it’s a lot to deal with. Family and friends tell me to be positive and that I’m too anxious. I’m keeping it together, I study and I look after my son and my husband. I cook, clean, do washing, groceries etc. I’m preparing for the baby, but I feel like I am doomed to have another sick child. Even if bub is healthy initially, the risk of reflux and allergies is more like 80% due to genetics. I am coeliac, and another child with autism is also possible. Family and friends think it’s all very unlikely because they don’t really understand all the conditions and how things are connected. If I try to explain, I feel like they think I’m a crazy person.