Charlotte’s Story
I had never heard of NICU before. When I had my crash section under GA as soon as arriving to MAU, I knew nothing of what was about to happen. I woke up, was told I had had a placental abruption and was in theatre for 1 hour because my womb wouldn't contract back down. My baby was in neonatal and apparently unlikely to survive. I saw her 4 hours later, on a ventilator, with lines coming out of everywhere, monitors beeping and nurses rushing around a darkened room. They whispered congratulations to us and said she was beautiful with heartbroken smiles, knowing she was likely to die before morning. I was being wheeled, alone to my room on the maternity ward with lots of other mothers. The only difference was I had a broken heart and they had full arms with beautiful, proud smiles.
The next morning over breakfast, our consultant came to see me, she knelt down, bad sign, to say my baby was very sick and wouldn't last more than a few days, to enjoy our moments. She said she was from very close to where I am from but despite my loneliness here, hours away from home, it didn't soothe me.
I went to see my baby, crying, pressed against an incubator, singing memory from Cats, the song I sang while pregnant, that she always kicked at the climax to. A song I can no longer sing without crying. I was taught to touch her and hold her firmly. I couldn't have her in my arms yet.
It was three days until I could hold her. It was the most magical, yet terrifying feeling. I was told about her birth, how she needed 30 minutes of resuscitation and adrenaline and compressions. How she suffered seizures and her brainwaves were erratic. How she had suffered a lack of oxygen, unknown how long for. I learned later she suffered HIE. They told us we needed EEGs and an MRI before we left.
I was asked to pump because they knew I wanted to breastfeed. The nurses laughed along with me when I joked about how I would whip my boobs out anywhere when she learned to breastfeed. I wonder if they knew she never would. I was told she would learn to suck properly at 32+ weeks and could start breastfeeding when she learned how to suck, breathe and swallow. Everyone said when she learned to feed and grew a bit, we would think about going home. Naturally you go to find other parents who had 29 weekers, seeking assurance all would be ok, which you find, easily. Miracle babies. 32, 33, 34 weeks gestation she still wasnt sucking or swallowing and I knew something was wrong, despite being told to give her time. We were tube feeding her ourselves, the nurses suctioning frequently. It was at about 36 weeks, that they added a hyoscine patch. One doctor commented on it and left the room. She came back and closed the door to sit beside me, bad sign. She said because of this sticker, it showed that Lottie had suffered a significant insult to her brain and may never be independent. That broke my heart. Just as I started to bond with her. I felt isolated again, from her, from everyone. I didnt eat for days. I needed to pump but I couldn't nourish myself properly. All I felt was pits in my stomach. Watching with a burning jealousy as other babies learned to suck, suck more and go home healthy. I knew all preemies had a chance of developing autism or cerebral palsy but none of it compared to what my lottie has and would suffer. I was seething with jealousy. Unable to talk to the other mothers, because they all asked how early she was and what was wrong, and every one of them hugged me and looked sad when I said she was brain damaged. But they were glad it was me and not them. Everyone was just glad it wasn't them. Lottie reached her MRI day and we learned the results on her graduation day. The week prior was spent learning to tube feed and suction and being signed off on the tasks we never even knew existed. We were taught baby CPR by the same ANNP who performed it on lottie after birth. You could see the pain in her eyes, as she remembered. We left with lots of medications and not a clue. As we came in on her last day in NICU (40 weeks gestation), we learned most of her MRI was clear, there was damage to her thalamus and posterior lentiform nucleus and she would have trouble with walking and motor skills. We left, overwhelmed but happy to be out.
We had two more admissions within a month to childrens ward with aspiration pneumonia. We added thickener and it solved the issue.
Then she started having infantile spasms, a rare but extremely serious seizure disorder. She was started on steroids and another whirlwind began. We were admitted 4-6 times over 2 months due to stomach bleeding, bowel issues and aspirating. All caused by steroids. Once they stopped, all resolved. She is now at a predisposition to seizures and on anti epileptic medication. She lost so much progress due to the spasms and still hasnt fully recovered.
Having a long term unhealthy child is difficult, she has reached none of her milestones, her therapy stopped over covid lockdown and she was all but forgotten. You find all the HIE forums, again searching for reassurance that she may be ok. You find all the miracle babies, the one who defied the odds and are relatively unscathed despite significant brain damage. You start to wonder why is your baby not like them? Why cant she defy every single odd? Despite her significant damage, why cant she smile or coo or crawl? We began to research, read papers, read more neurology papers than any neurologist, to find better therapies, paying out of pocket for them. No nursery can take her, I will have to give up my job to full time care for her. We are constantly reminded of what she cannot do. It always hurts to see another baby, younger than lottie, achieve what we can only dream she will achieve one day. She has currently been diagnosed with dystonia and we are awaiting a cerebral palsy diagnosis as well as others, she has hearing loss and we suspect has visual issues too. We dont know how long we will have with her. My heart breaks often, but the inchstones make my heart soar, even if no one else will acknowledge them. The instagram community really saved me, sharing our story with people who get it, people who understand the lows and know just how much any progress means. I have learned more from them than I did from any doctor and they taught us all about the therapies we now follow.