A Mothers Hope: PART THREE - In need of hope.

Posted by Susie Bartlett on


You know how sometimes you start on a journey of perils and trials, yet you are oblivious that it has even begun..... That was the denial I was facing, sitting in that hospital ward.

Isaiah 41:13 - For I am the Lord your God who takes hold of your right hand and says to you, do not fear, I will help you.

After a rough first night, what I was hoping would be our only night in the Children's Hospital, many tests were done the next day to confirm the doctors suspicions. I remained at my precious baby's side, determined to be with her for whatever they needed to do. I remember one procedure, that even now, 27 years later, brings tears to my eyes at the helplessness I felt at the time. Janelle had to have blood drawn for multiple testing and we were taken to a small room at the end of the ward, I distinctly remember it was the last room on the left hand side. It basically just had a steel surgical table and a few trolleys, cupboards and benches, stacked with needles, syringes, bandages etc. From memory it also had oxygen and CPR equipment. I placed Janelle on the table and the nurse strapped her arm down so she would keep still.... she started to cry. I tried talking to her hoping to soothe her but as the the needle broke through Janelle's delicate skin, her crying became worse. I could have coped with just that but the nurse couldn't find a vein, so she tried again only to be unsuccessful. Another nurse was then called and they tried twice more, by this stage Janelle's screams could be heard out in the corridor and I was starting to get distressed as well. Still no vein was found. I was beginning to panic but I was a bit shy and insecure back then and easily bossed around by others. The nurse refused my request to pick Janelle up and comfort her and after the fourth attempt she just abruptly said 'well we will just have to try the other arm!'... I ran from the room crying. It was the only time I ever left Janelle during a procedure and I later found out that nurses are only allowed three attempts at collecting blood and then they must call a doctor. Afterwards, I regretted running from that room and not standing up to those women, but in their defence they were just doing something they dealt with everyday and had become numb to. I, on the other hand, was in a world I knew nothing about, facing my baby having an illness I knew less about and still going through the raw emotions, a mother of a three week old baby feels.


So later that day, after the results came back, the doctors told me the devastating news that Janelle had four Hemangioma- 3 of them being internal. One in her throat, one in her cheek, one behind her eye and an external one on the side of her nose.  Shell shocked, I tried to understand this big medical word that they said would get a lot worse before it got better.... if it got better! Hemangioma is the medical term for birthmarks, which are a group of multiplying blood vessels that look like a tangle of fishing line. The have no easy border, so removing them is hard and Janelle would have haemorrhaged and died if they tried. Also the risk of her going blind was very real and depending on their growth in her throat, she was facing the possibility of a tracheotomy


I remember the doctor repeating that it was going to get worse, as if he was preparing me for what he knew would come. The disfigurement, the long term hospital stays and the possibility of it being life threatening... yet still, in my mind it didn't sink in. He explained that this was extremely rare, especially the position of the Hemangioma, and they were dealing in unknown territory. There were treatments they could try but no guarantee of success. Essentially...... Janelle was an experimental guinea pig.Multiple doctors appointments were booked before we were sent home, all of them at the hospital, so traveling was going to be a big part of our routine. I was bewildered, scared and yet still needing to function and look after our family of five. Most of all though, we needed a miracle!

READ PART THREE- Hope on the fifth floor HERE



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