BCT member Abbi shares her very personal story of how her family coped with the neonatal birth of little Chloe.
Chloe was born on the 18th March 2019. 11 and a half months after her big sister Mila was born and one month early. It was different this time. With Mila, as soon as she was born I wanted to hold her and not let her go but Chloe and I experienced a difficult pregnancy together and I just wanted to know that she was OK before I held her. I was told she was absolutely fine, they put her on me and exactly two minutes later, she was taken away to the neonatal ward.
I knew this was going to happen but I didn’t realise this meant I would be left in the delivery room alone whileeveryone left with Chloe. But I was happy she wasn’t alone. I had to wait a long time before someone came back for me and I finally joined her after I was showered and checked and by the time I got to her, she already had a feeding tube in her nose. We were told that we would not be allowed to pick Chloe up but we would need to have a nurse pass her to us while we sat in a chair and, once in the chair, we would not be allowed to leave for at least 2 hours. Any more activity than that would be too much for Chloe. Even when I was told that I wouldn’t be permitted to hold her at all after 6pm, I had to be OK with it. These were the rules in this ward. But I was admitted to maternity, not neonatal and I had regular doctor and midwife appointments that I had to attend, so Chloe was left alone in her incubator while I went downstairs and my husband went home to bring Mila to see me. Mila was too young to be allowed in to neonatal so I had to decide which baby to spend time with.
After a few days, I was sitting with Chloe and something wasn’t right but no one could quite place the problem. It wasn’t what anyone said, but there was an atmosphere around Chloe’s bed, it was enough for my doctor to extend my stay by an extra day.
On the day of my discharge, I had to be pulled away from Chloe, I was in tears, I didn’t want to go. My husband stayed with her though and I went home to see Mila and put her to bed for the first time in days! With that, I was calmed. I missed Mila, she was my companion for the previous year.
I was giving Mila her bedtime milk when a text came in from my husband, Joris, telling me that the doctor wanted to speak to me. There was something wrong with Chloe and she had to be transferred to Gasthuisberg, to the high level intensive care neonatal unit. I put Mila on the floor, bottle in her mouth and I walked out the room. This was the first of many breaks in Mila’s trust for me. Within 30 minutes Joris was home, I had packed a bag and we were on our way to the hospital. I had no idea where Chloe was. None. It turned out that a doctor from Gasthuisberg had come to collect her in an ambulance, placed an IV for fluids and brought her to the children’s ward. But we didn’t know that. We turned up to the main reception and it was all so fast, she hadn’t been registered into the system yet. We just had to wait. Although I had given birth only 4 days prior, I walked as fast as I could to neonatal, it took 15 minutes. Gasthuisberg is huge!
On arrival, we were met by a nurse who told us that we were not yet allowed in to see Chloe. I heard nothing after that. I don’t know how long she spoke for or what she was saying but I just sat there and waited for the words to cut through my mist of confusion and pain. We were finally allowed in to see Chloe, she was wrapped up, in an incubator, with an IV in her head and many wires coming out from under the sheet. They told me that she was nil by mouth because, in the hospital she was born in, they had extracted green fluid out of her stomach via her feeding tube. They had to work fast to find the cause of the infection. She was put on three different antibiotic cocktails, every two hours and they took blood every hour, each blood test required up to six attempts because she was so small and, at that time, dehydrated.
We were told that she was stable and that we absolutely must go and get some rest. They had many tests to do and, as this was a high level intensive care unit, her room doubled up as a small procedures room and we were not allowed to be present for many of the procedures. They had to get on with their work and we were shown to our room. We were allowed to visit any time though. I visited Chloe throughout the night but no information was forthcoming. I wasn’t allowed to hold her.
First thing, Joris and I both went to see her and the doctor that had collected her came to talk to us. She said, ‘I got no sleep last night, I didn’t think she was going to make it’. This really threw me, I really didn’t know she was so sick. They told me that normal white blood cell count should be below five and Chloe was currently at 267. She was dying and they didn’t know why. They had more tests to do and we weren’t allowed to be there for them, so we went home to Mila but my heart stayed with Chloe. From then on, Joris and I were almost never together. One of us was with Mila and one of us was with Chloe. I decided that I wanted to put Mila to bed every night so I tended to visit Chloe in the morning, which was also when the doctors did their rounds. Days went by, more tests were done, and no more answers came.
When Chloe was one week old, she underwent exploratory surgery on her abdomen where they discovered that her appendix had burst. For three days, stool had been escaping into her abdomen and this is what had caused the blood infection. Shock, then relief. Did this mean she could come home soon? We were with her the next day as she was being woken from her sedation and this is when we were told that Chloe’s neonatal story wasn’t over yet. She had double heart disease and our hopes of her coming home were taken away as fast as we created them.
Chloe’s more pressing heart issue was that she had a hole in her heart. It could either heal itself or it would need surgery in a few months. All we could do was wait and, in the meantime, they performed every test they could think of to see if there was an underlying disease linking all her problems (there wasn’t).
Days and weeks passed by and from nowhere we were told that the hole was too big and it was making it difficult for her to breathe. She would need an immediate interim heart surgery to help and suddenly she was taken away again. After the surgery, I asked if Chloe was OK and they told me that she was stable but not OK. First thing the next morning I was sitting by her bed when six doctors walked in, they explained that there was a complication, there was more swelling than expected and she would need to go in for a corrective surgery immediately. Within the 30 minutes that followed, while I was sitting with Chloe and waiting for Joris to arrive, the tube that was draining all the fluids away from her heart blocked and the blood found a new exit. I watched as blood poured out the hole in her chest and covered her entire abdomen. It was wiped away and the tube was unblocked – no big deal for the nurses. Joris arrived at a point where her breathing machine malfunctioned and we watched her as her vitals dropped, no longer receiving oxygen. This happened three times and, once the machine was fixed (a valve popped open), she was then taken down to her second heart surgery in 24 hours. Her third surgery in her short life. She was one month old.
I broke that day. Everything before then had been a challenge but on that day, watching my baby die then live again, just to be taken to surgery, it broke me in two and I wasn’t the same after that. I had emotions, good and bad, I appreciated the wins like a successful surgery and her opening her eyes properly for the first time because finally she was receiving the right amount of oxygen that her body needed and without machines. But when we were told that she would need to stay longer because, for the first time in her life, she would need to consume all her milk from a bottle and no more feeding tube or IV, I just accepted it. We spent weeks with her trying to teach her how to drink, something newborns instinctively know how to do, but Chloe wasn’t a newborn any more, she would have to learn. I was delighted when we got to take her home but three days later, when there was blood in her nappy and she was diagnosed with a bowel disease, I accepted that too. I was broken. I had nothing more to give but I stayed by her side and, when I was with Mila, I played and put her to bed.
But I was not present in the moment, I was in survival mode. Waiting for the next trauma to happen.
A few months later and with another hospital stay in the middle for a different problem, Chloe went into the beginning stages of heart failure and was taken to her open heart surgery to close the hole in her heart. The recovery was not without its complications but it was a success and we brought home our healthy baby girl just ten days later (albeit with damage to her pulmonary artery).
The sad fact was though, that we were all damaged from the repeated traumatic experiences. And at one year old, Chloe still couldn’t properly drink from a bottle, couldn’t walk, couldn’t crawl, couldn’t even respond to her name, she was behind in every developmental marker that existed. Medically, Chloe was well, but we found out that she was suffering from stress and anxiety of regular and repetitive traumas. It took a long time before we were introduced to Kleine K, a clinic for babies with eating and sleep disorders.
I can’t explain how much they did for us. They saved us. We were admitted as a family, we attended up to four days a week, for between three to six hours a day. It was an intensive psychological programme that pushed us to our limits and supported us in every way that a family needs supporting. When we started, Joris and I couldn’t say Chloe’s name without crying, Mila would hit me every time I told her I loved her, we were not a family unit, we were not even ourselves. And now: Chloe eats, she is walking, not only does she respond to her name, she can (almost) say it! She goes to creche and loves it, Mila goes to school and loves it – we are a normal family with normal problems like catching colds and head lice!
I never knew I’d be so content with ordinary and I had no idea what people could go through and come out the other side. When people meet us, they can’t believe that Chloe was so sick, sometimes when she is practising her jumping and singing songs while spinning in circles on the floor – I just can’t believe what she has survived. She is a miracle. My children amaze me every day.
by Abbi Vyncke
This article was first published in the Autumn 2021 edition of Small Talk magazine.
 De Kleine K is a department of KU Leuven hospital where parents can go with their babies, toddlers and preschoolers for day treatment in case of problems within the development and upbringing of their child. www.upckuleuven.be Tel: 016 34 38 21