When the surgeon told me that it wasn’t a case of when they would operate, it was now or never, I had no words left to say, other than “please look after my little girl”.
Where do I start? You will have to bear with me with this post as it might be a little bit of a ramble, but I wanted to sit down and explain to you all why I went completely off radar for the last 3 months or so. You were all so supportive to me throughout my pregnancy so I didn’t want to not keep you in the loop as to what has happened since. I have received so many lovely emails and messages via social media of concern from lots of you, so for that I thank you and I am sorry I haven’t replied, but as I will explain the last 3 months have been emotionally and physically the hardest of my life, so far. Writing this post has been incredibly tough and reliving so many moments that are forever etched in my memory.
On 1 September Florence stopped breathing in my arms, the colour drained from her face, she went completely rigid and her eyes rolled. She had been breastfeeding, she’d come off, been burped and was lying in the nook of my left arm sound asleep. My first reaction was survival mixed with sheer terror. We lived in the middle of middle of middle of nowhere and the nearest hospital is 45 minutes drive.
I checked her airways, clear, tried to feel her breathing but she was completely rigid and unresponsive. My mother was with me, thankfully, and so I ran out of the house in a milk stained pyjama top, bra-less, with no blood sugar meter, keys or money and no car seat holding my newborn baby who wasn’t breathing blowing in her face, rubbing her on the back and trying my hardest to bring her back around. I just told my mother to drive and so she did, we flew up the drive and along the country lanes.
I opened the window as it was a very hot day and about 3-4 minutes after she’d stopped breathing she came around, very, very slowly. She was very sluggish and quiet but by the time we got to the Dr 15 minutes later she was back to her normal self, gurgling away. I was so confused by what had happened. The dr checked her over and said she was a healthy baby but that we should go to hospital just in case. We drove straight to the hospital and the children’s ward, again she was checked over but after I described in detail what had happened the pediatrician said we should be admitted for the night for observation, for my peace of mind (please note the sarcasm in my voice)! They took blood from Florence and performed an ECG. The next day we were released on the suggestion that it was just a one-off and that “these things happen”. These things don’t just happen, I was certain.
Three days later we were back in. Again, I’d been sitting with her alone and she’d just stopped breathing whilst asleep in my arms. Jonathon was out of the room and by the time I had screamed for him to come, she had come back around. We went to a and e again and were readmitted for 2 days. They performed more bloods, an ECG again and put her on a sleep apnea alarm over night. There was a sense of “oh it’s you again” when we were admitted in to the ward, and the first thing the pediatrician said to me was “you’re a first time mother”. It wasn’t a question, it was a statement, as if, having carried my precious baby for 9 months I would really want to be having her pricked and prodded. Hospital was the very last place I ever wanted to be.
As usual the tests were all perfect and they diagnosed her with “silent reflux” and told me to start thickening all her feeds with a thickener called Carobel. I disputed that she had no reflux symptoms, fed well and wasn’t a sickly baby but they assured me that it was silent reflux and the non-breathing was because when she slept the acid would come back up, burn her throat and cause her to hold her breath. I mentioned to them that I thought her tummy was slightly distended a lot of the time but they assured me that this was trapped wind and that I needed to burp her for longer.
So, feeding time suddenly became incredibly long and like a military operation. She would have expressed milk with thickener from a cup or syringe, she then breastfed for as long as she wanted and then would need burping and sitting up- for ONE hour! Given that she was feeding every 2-3 hours, it made the whole process incredibly long-winded and incredibly tiring. But it didn’t faze me in the slightest and I was so adamant that I didn’t want her to have one of her episodes again that I was timing every feed and making sure I sat her up for exactly one hour, without fail.
To cut a hellishly long 7 weeks that followed Florence then had another 7 non breathing episodes, each one when it was just me alone. Even Jonathon was starting to question the authenticity of them and I’m sure he was wondering whether I had postnatal depression as I was so adamant that something wasn’t right! At my 6 week check up with the Dr, I explained everything that had been happening and he told me that in his 30 odd years of being a GP he’d never come across a baby that looked as healthy as Florence did, who then turned out to be unwell. Haunting words.
The final episode she had was in a cluster of four, one after the other. She screamed pain after the final one and was inconsolable. It scared me so much that I took her back to a and e. This time I, again, mentioned that her tummy was frequently hard and seemed tender. The Drs, again, told me that as a first time mother I was, of course, going to be “paranoid” about every little thing. I assured them that although I was a “first time mother” I was certainly not being “paranoid”. They asked whether I had videoed one of Florence’s episodes? The answer being a firm no, all I wanted each time she did stop breathing was to bring her back around. They prescribed her with a drug called Omeprozole and said that I should start giving it to her but that she could still have the non breathing episodes, it would just be a waiting game. I felt like they were just fobbing me off and so I took the prescription and spent the following week researching the drug, adamant that I wouldn’t be giving it to her.
The week following the cluster we were in London for 6 days as Jonathon was working very long hours. I felt safe being in London with the assumed comfort that if she was to have another episode I could have an ambulance with us in minutes. The 6 days in London were seemingly blissful, as although I was cautiously watching her every move and breath, anticipating the next episode, nothing happened. It’s amazing what the human brain does when nothing bad happens. I found myself suddenly questioning myself, was I being paranoid all along? Had she grown out of them?
A couple of days after we got back from London Florence seemed to have what appeared to be a cold. She was really hit hard by it and really not right. I checked her temperature and it was 38.9. It was a Saturday and 111 sent us to an out of hours doctor (a different hospital to the one we had been attending). The Dr checked her temperature and it was still high so she was admitted as a day patient for watching and assessing. The Dr on the ward was fabulous; interested, insightful and understood my worry regarding the episodes. They took a urine sample and bloods and after a day being assessed Florence was sent home. At 5am we awoke to Florence screaming, pain screams. She wouldn’t feed and just screamed and screamed hot heavy tears. Again, I checked her temperature and it was 39.5. We both panicked, called the hospital and the dr said to go straight in, we did.
They performed a lumbar puncture on her and gave her antibiotics intravenously. The Dr said that her white cell count had clotted so they would have to perform it again the following morning. She was not going to be in but said she’d leave clear instructions to repeat the test. The following morning the Dr doing the ward round came in and diagnosed her with a urine infection, performed no more tests, said he didn’t need to do the white cell count as what ever she had, the antibiotics would clear. I, again, mentioned her tummy being rock hard, her tummy button sticking out and asked if he could look at it. The nurse with him mentioned the silent reflux diagnosis and instead of listening to me, he told me to give her the Omeprozole to help with her “acid”, and walked out. I was dumfounded, but he was a Dr, one of many that we’d seen in the 9 weeks she’d been on Earth and I had to trust them. We were discharged and I cried on leaving, a huge part of me felt that there was something really wrong.
Only 2 days after being discharged I was home with Florence and she started vomiting. It wasn’t just baby sick, of which she had never been, it was projectile and constant. Throughout the afternoon it got progressively more yellow. I called my husband who Googled it and said it was probably gastro-enteritis. It didn’t seem right to me at all. I called our GP (5pm on a Friday) and said I was coming in and needed to be seen. The GP saw me, along with the bottle full of sick I had scooped up!! She agreed that it wasn’t right and that we should take her back to the hospital we’d been discharged from two days before, just to be on the safe side. Her lasting words to me were “so long as it wasn’t green, we don’t panic, if it’s green, it’s serious”.
An hour drive to the hospital, me watching Florence’s every breath. At the traffic lights about 100m from the hospital, she vomitted green. I unstrapped her and holding my tiny baby in the recovery position I ran through the corridors I had only left her with 2 days before. Once in the ward, passed all the parents waiting in a long queue, I said “my babies been sick with green vomit”. From that moment everything was panic stations. 3 Drs came from nowhere, they whipped Florence out of my arms and ran her in to a room. They put a tube through her nose in to her stomach to aspirate any more green, they inserted a cannula in to her tiny hand, still marked with the pin pricks of the days and weeks before. They said they needed to get us to a leading children’s hospital to a surgical team, and fast. They kept mentioning her tummy and asking me how long it had been hard and distended for. Suddenly, the weeks and weeks of me banging on the Drs doors, hospital admissions and asking question after question, mentioning on many occasions that her tummy didn’t seem right hit me. My baby was very very poorly and I hadn’t been paranoid at all. There was panic written over every Dr and Nurses faces, having discharged us two days before, watching me walk out with tears streaming down my face and telling me that “she was fine”.
They wheeled her down for an emergency abdominal X Ray, called an ambulance and luckily got her a bed at Southampton Hospital, for which, I am eternally grateful. I was strapped in to the ambulance bed, with my very very upset little girl strapped to me, with tubes and wires coming from so many different places, I couldn’t bear to look. Jonathon followed behind the speeding ambulance, blue lights flashing. All I could do was hold on to her tiny hand and tell her that Mummy would look after her and she would be ok, I promised. The Dr who came with us in the ambulance told me that it was very likely she would have surgery, but they weren’t sure what type or on what, just that her blood results showed infection markers and they were treating her for potential stomach sepsis.
At Southampton there was a surgeon waiting, who I will call Dr Fred. Fred was very concerned and asked me to tell him the story, from the beginning. So I told him everything, from my 36 week scan, where her tummy was measuring a little bigger, to all the episodes, the Drs visits, the hospital admissions and what I didn’t think was right with her tummy. As I told him the story he kept pressing her left hand lower side and each time he did, she would wail, hot tears flying from her tiny little face. Dr Fred said he was certain that she didn’t have silent reflux and that these episodes were related to what ever it was they were going to treat and that they needed to perform an urgent ultrasound and that he was bleeping the main surgeon Mr Smith. During the ultrasound with the sonographer I listened to what she was saying to the Dr. She could see the right ovary, but she could only see a mass on the left hand side. What was it? She wasn’t sure. Back upstairs, it was by now 4 am, Dr Fred said that surgery was urgent and that they would be performing a laparoscopy first followed by, potentially more intrusive abdominal surgery depending on what they found. They thought that her ovary might have twisted but that her bloods indicated serious infection so whatever it was needed treating.
Dr Fred had been up for 40 hours and was visibly tired and yawning. I told him that I was certain of his ability as a reputable surgeon, but that I wouldn’t have him perform any operation on my baby. He said that he completely understood and that, in an case, Mr Smith would be performing the surgery and that he would meet with us as soon as he was in. I was wired with adrenalin and panic. Thoughts flying through my mind, replaying the last 9 weeks over and over. I was numb. Over the weeks I had cried so so many tears, worried continuously and researched medical journals, Google, forums and books more that anything, hoping I could find the real answer to her non breathing episodes. Now I was sat, waiting for the surgeon to arrive. The feeling of satisfaction that one would usually get when proved right all along couldn’t have been further from what I felt. I felt like I was sat in a continuous nightmare.
When Mr Smith arrived, he was calm, measured and met my concerns with a respect I had not once felt throughout Florence’s short life. He said it was time pressing that he got her in to theatre, that he’d reviewed the ultrasound and that there was a team waiting and the anaesthetist would need to speak to me.
Several waivers later, Jonathon and I were sat in silence, tear-stained faces, staring at our little girl who was awake and breaking some small but uncertain smiles as to her current abode. My heart was broken. The nurse came in and said theatre was ready so as Florence was wheeled down in her huge iron cot, we followed. Down at the theatre reception, I was inconsolable, I had done everything in my physical power to keep her safe throughout the pregnancy, birth and her life so far, and now I was about to let complete strangers put her to sleep and cut her open. We were met by the anaesthetist who put an arm around me and said “We will do everything in our power to keep your little girl safe”. I couldn’t bring myself to say goodbye, I could only say “see you soon little one”.
For the 1.5 hours that Florence was in her operation, Jonathon and I sat dumfounded in her room staring out over Southampton. When his phone rang, we both sprang up. It was the Surgeon, Mr Smith. His first words being “She’s ok”. She was in recovery and we could go down to see her in about 45 minutes. He said that as soon as she was under general anaesthetic he could feel a mass on her left hand side and so he performed abdominal surgery rather than a laparoscopy. Once in, they found that her left ovary had twisted 360 degrees, swelled four times its size and stuck itself to her bowel. It was unsalvageable so she had it removed. Everything else was intact and in good working order. We are so very very fortunate that it was caught when it was as with the knowledge that sepsis was setting in, any other outcome does not even bear a second thought.
Florence was in hospital for a week in total including recovery, and she is the strongest, bravest little girl and my heart bursts with pride and fortune. Only a day after her operation she was a completely different baby, the smiles were constant and non stop and she coo’d away. The consultant said that she would have been in considerable pain for weeks and weeks and weeks and that all her non breathing episodes were a reaction to the crippling pain. This ovarian torsion could have even happened whilst she was still in my womb- hence her tummy growth at the 36 week scan. However, as with most things, there’s no way that we could ever determine why it happened when it happened or how it happened, it’s just one of those unfortunate things, but I am so grateful that she will never ever remember it. Being in a children’s ward for over a week and seeing other children so poorly and other parents so very worried really opened my eyes to how precious life is and I have not allowed myself one moment to really dwell on what has happened as I realise how fortunate I am to have my beautiful baby.
I did ask if she was a medical phenomenon and whether they wanted her autograph but they said that although rare, it wasn’t as uncommon as it might seem. Ovaries and tiny babies aren’t something that you would ever normally consider together, but an ovarian torsion does and can happen at any age. So, Florence and Mummy now have matching scars, although I have to say that my C Section scar is a purple car crash by comparison to her beautiful faint line. Any one who doesn’t know that she had the operation would probably never even notice.
Eight weeks on from her operation and (touch wood) she is thriving. She has bought an incomprehensible amount of love in to our lives that we never knew possible. She’s put on weight, feeding beautifully and is such a little character, always smiling, cooing and content. She even has a stubborn bottom lip that comes right out when she gets angry or upset- which I secretly adore! She’s sleeping through the night too which we are ever so fortunate for, I know.
I will never let any one question my instinct again, be it about Florence, me or life in general. I was made to feel like I should be questioning my own sanity and no parent should ever be made to feel like that. Be it your first, second or fifth child, a mothers instinct is so strong, always trust yourself.
Part two to come!
Thank you as always for reading, your support means so much to me. Thank you also to all the Drs, Nurses and hospital staff at Southampton General Hospital who made our little girl better.
** Drs names have been made up for identity reasons.