Late preterm: A little warrior

Our story

I found out that I was pregnant with Chloe when my first daughter Mila was just six months old. Within a day or two, I heard that I was already in my second trimester and within a month, I heard that Chloe had SUA: Single Umbilical Artery. I was told that only a very small percentage of babies had any problems with this condition so I continued to focus on Mila. I’m happy I did that because the reality is that 20% of SUA babies develop health problems but I could continue to focus on Mila while living in ignorance. At seven months pregnant, she stopped growing, stopped moving, her heart stopped beating regularly and I was told after a lengthy and painful examination that the doctor thought she was dead and I was to be prepared for a c-section birth of a still born baby. And yet, that was not the case. My doctor pulled herself together, made me eat some sugar and put me back on the monitors. There was a heartbeat, but it was faint, irregular, it was not strong. That tiny little heart in that tiny little body was monitored consistently for the next few weeks and at 36 weeks, she had done all she could, and out she came.

As I understood it, and as it was supposed to happen, as soon as the umbilical cord was cut, all her problems would go away. She scored better than Mila did in the APGAR test but nevertheless, she was sent to NICU to grow. Two weeks, I was told.

We were in a small local hospital and the neonatal unit was more of a care ward, not an intensive care ward so the quantity of staff members was shockingly low. That is to say, one nurse covered the night shift. I was allowed to visit any time I wanted, but I was not allowed to pick her up. The next day, I was told that I wasn’t allowed to touch her, talk to her or let her smell me because she just needed to rest. The day after that, I turned up and she was covered head to toe in a white sheet, so I naturally thought that she had died. Then I noticed her monitors beeping so came back to myself and asked what the hell was going on! She was too ‘prikkelbaar’ and couldn’t handle any external stimuli. I live in Belgium, so to add a layer of confusion and distrust to the whole situation, only sometimes did I get the information in English. It just depended on the nurse, and back then, my Dutch was not good. I certainly had no understanding of medical terms, but I understood ‘prikkelbaar’. Maybe, I knew she was sick, I just hadn’t processed it all yet.

Later, when I was home with Mila, trying to put her to bed, I got a phone call saying that Chloe was being taken to the bigger hospital nearby because she was sick and they just didn’t know why. When I turned up, I wasn’t allowed in to see her. Her new room was an intensive care room in the intensive care neonatal ward, meaning that her room doubled up as a small procedures unit. Any time they had to take large quantities of blood, place deep vein IVs, do certain tests and I don’t even know what else, I was not allowed in. I was only allowed to sit outside the room and listen to her screaming. I was told that screaming was very positive, because at least she had the energy to do so. Chloe’s white blood cell count was almost at 200 and the doctor told me that she didn’t expect her to make it through the night. She did make it through though, she carried on like this: being poked and prodded, getting spinal taps and having biopsies taken with no sedation because they were already giving her too many drugs to fight this infection – whatever the infection was. Three days later, they discovered it. Her appendix had burst. Surgery removed it and we thought it was time for her to recover, grow and come home.

When Chloe was first admitted, they didn’t know exactly why she was so sick so we were not allowed in to the parents’ lounge. I had no-one to talk to, no-one to process it all with. When I spoke to people, I just had to answer their questions but I needed someone to listen to me, even though I couldn’t find the words to say anything. When I was with Chloe, my husband: Joris was home with Mila. When I was with Mila, Joris was with Chloe. We were never together during the day and when we were together at night, we were too exhausted and lost to communicate.

The day after Chloe’s appendix was removed, a lady walked in to her room and introduced herself as the councillor for the neonatal cardio department. I told her that she was in the wrong room because Chloe was a gastro patient, and she said, ‘oops, (with a smile on her face) have I come too soon?’. At that moment, the cardiologist walked in and took the time to explain the anatomy of the heart so that I would understand exactly where the 1cm hole was.

*I could never forgive the councillor for her mistake, for not being able to read a file before entering a room! I could therefore also not talk to her about my side of it all.

After a few weeks of trying to help Chloe drink, instead of just always feeding with the naso-gastric feeding tube, it was decided that she just wasn’t ok and that a first heart surgery was needed. They would be able to close the VSD later but for the time being a band would be placed around her pulmonary artery to reduce the blood flow to the lungs. It was supposed to help her with her breathing and drinking. By morning, I saw a collection of doctors gather in the nursing station and I always felt something when I saw that. I knew someone was going to be getting bad news and the more doctors, the worse. So, when three doctors, two surgeons and three nurses walked into Chloe’s room, a sense of panic started to rise up within me. I was told that there was a complication from Chloe’s surgery; after a surgery such as this, swelling is to be expected but Chloe’s heart had swollen to such a degree that the band they placed around her pulmonary artery was so tight that she was struggling to get enough oxygen, even with the machines breathing for her. She had to be prepped for another surgery, immediately. I called my husband, I couldn’t take her down again on my own. I needed him, more than Mila did at that moment. I was pretty sure of that.

What happened in the 20 minutes that followed, made that time the worst time of my life. And that day, the worst day of my life.

Blood started pouring out of the hole in Chloe’s chest incision, within seconds her whole torso was covered in a pool of dark red blood. I couldn’t move, I couldn’t speak, I just watched it happen. My brain couldn’t figure out if she was alive or dead and in a split second, I concluded: alive, because her blood could only pour out like that if her heart was beating. In hindsight, I think that was wrong, but the decision was correct, she was alive! Her drainage tube had blocked and the blood needed to find a new exit point from the body. The nurse unblocked the drain, cleaned her up, and prepared her for surgery. Joris arrived shortly after when also the transportation nurses arrived to take her down. They swapped her intubation machine from the bedside one to the travel incubator one and they were talking so they didn’t seem to immediately notice her monitor numbers dropping. Joris and I looked at each other and then the monitors as we watched her blood oxygenation levels drop from one hundred down. I shouted at the nurses and they jumped to action to disconnect the travel incubator intubation and re-connect the bedside one, but her breathing had all but stopped. The numbers rose immediately back up to one hundred and she was stable, but for no reason, they started to drop again. A nurse went to get a hand pump to be attached to the intubation tube but by the time she was back, again, the machine had basically stopped breathing for her. The hand pump got her breathing back up to one hundred as she continued to do that while the others tried to work out the problem with the machines. They attached a new tube to the travel incubator, and re-attached Chloe’s breathing tube. Thinking that would solve the problem, they started talking again about her monitors and wires and Joris and I watched again as her numbers started to fall. I couldn’t believe they weren’t seeing it, so I shouted and hit the nurse to get her attention. They re-attached the hand pump. In our minds, she had just died three times. Not breathing, means dead. Joris sat on a chair facing the wall, crying and I just stared at her. I thought, if this is it, if this is how you die then the least that I can do is look at you in your last moments. They found an open valve, closed it, attached Chloe to the machine and took her down to surgery. Because that’s what neonatal nurses do. The solve the problems that face them, and move on to the next patient.

Joris drove me home to Mila and to wait for a phone call to tell me if Chloe was dead or alive. I assumed dead. Who could live through all this!

But she did. I’ll never understand why she fought so hard to live. But I’ll be forever grateful that she did.

One week later, Joris and I celebrated a wedding anniversary and against my nature, we decided to take some time to ourselves and go out for dinner. It didn’t last long. We gulped our food down as fast as we could and went to see Chloe. As we entered the room, two people dressed as surgeons walked out the other door. I called after them but they didn’t come back. I asked the nurse what we had missed, did she need another surgery, or had they just done one! She told me not to worry, they weren’t surgeons. I asked who they were, but she refused to answer me. After strongly insisting, and having to almost aggressively insist on information, I was told that Chloe was such a good baby, who never cried. And one of the nurses’ family members (mother and sister) wanted to meet a ‘neonatal baby’ and Chloe was the chosen one! My own family hadn’t met Chloe yet, and this was a closed unit – it was absolutely against all the rules and against all levels of care, decency or common courtesy. I put in an official complaint, which went nowhere, because as was explained to me by a doctor – the nurses rule the roost here!

I was delighted to leave three weeks later, and in another version of this story, that was my only emotion. But in this version, I was delighted and devastated. I didn’t trust some of the nurses, but whatever happened, they saved her life, and when you lose the level of care that neonatal provides, the feeling of fear dominated my feelings of disgust towards the nurses that allowed my baby to be exposed to strangers just one week after the worst experience of my life. My structure was gone, my support was gone, my on hand expert advice was gone. On top of that, I was broken. The previous months had taken me to depths I never knew possible in terms of depression and hopelessness. All the while trying to stay upbeat for my one-year-old who was at home, but not understanding what happened to her mama, why I was crying all the time and why I just wasn’t around as much.

I hit a new rock bottom three days later though, when Chloe went back in to hospital with beginning stages of necrotising enterocolitis. She was 2 months old, and Chloe’s medical issues went on for a year. She was in and out of hospital with one problem or another. Then in her second year, she was diagnosed with depression and an eating disorder due to repeated complex traumas which resulted in an eight-month stint in the baby and child psychiatric unit at the hospital. All this was in paediatrics though, not neonatal, so this isn’t the place for it all.

I just want to end with this though. Chloe and I had no bond. I thought she had died or was going to die so many times, that I subconsciously put up barriers with her. At 18 months, she didn’t respond to me and I had no idea, not one clue what she needed or when she needed it. We were strangers to each other. After learning the principles of Infant Mental Health through the incredible team in the psychiatric unit, we have built every broken and burned bridge and we have even discovered new ones. Whatever you go through as a mum, and whatever your baby goes through, if you both survive it, all can be healed and forgiven.

Thank you so much to Abbi for sharing Chloe’s story with us. Our aim is to highlight all aspects of prematurity and NICU stays so please share your story with us here if it feels okay to do so.