After a forced induction at 38weeks Bryony was finally born 7lb 12oz. On day three my waters had been broken when I wasn’t even dilated and I was left on a hormone drip for 19 hours before both me and baby ended up with sepsis that was missed by midwives and were rushed in to surgery for an emergency section.
Due to my c-section also going so wrong where I lost a lot of blood and had several seizures during delivery, me and Bryony had only spent 5 minutes together in the 6 days we were in hospital. From there, breast feeding just didn’t happen.
Bryony was so used to formula and even though her latch was great, she would get frustrated at how slow it was in comparison to a bottle so for everyone’s sanity I stuck to what she knew.
Two weeks in we were having projectile vomiting every day, Bryony was coming up in a rash every time she fed, scrunching her tummy up in pain afterwards and it would take 45 minutes to get any wind out of her. When she was awake she was crying/screaming and the only way she would sleep was a brief nap after she had exhausted herself to the point of inability to stay awake. I was so upset, I knew something was wrong but every time I phoned the midwives they kept telling me it was just heat rash from crying and the crying was just colic and I would have to ride it out.
Week 5 was when I hit breaking point, I was up all night holding her to try and sooth her and then the same all through the day and the only sleep I would get was a brief two hours when my husband came home from work and would have her whilst I got some rest, I was shutting down, my body was struggling to recover from the surgery, no one tells you how hard that will be. I spent my days sat with a screaming baby in my arms staring at the walls feeling numb, why couldn’t I sooth my baby? Did she hate me that much she just wanted to scream and scream and scream..
I couldn’t drive until week 6 and to be honest I didn’t want to leave the house, Bryony was so inconsolable I wouldn’t know what to do had I of left the house; at this point I was trying all sorts of colic relief products that broke down the lactose in the formula, gripe water, Infacol for her wind issues it was never ending and costing so much but I was desperate!
Anyway, week 5; it was a Wednesday and I was sat on the sofa feeding Bryony and she vomited but it was different to usual instead of shooting across the room, it flooded out of her like a waterfall all over her and over me which soaked us both through, Bryony was wearing a white onesie and as I looked down I could see clots of blood throughout the liquid that was soaking through our clothes. In a panic I first wanted to get her changed but as we got to her room, I just slid down the wall to her nursery floor with her crying in my arms and called 111. They put me through to a paediatrician who asked a set of questions ..age, are they conscious?, are they blue?, do they respond when you say their name? (She was 5 weeks old of course not)
She said it sounds like there is nothing to worry about but go to the doctors if you are worried and see what they say. We got to the doctors and they looked her over, she had torn her oesophagus and ruptured the blood vessels in her nose but it’s just reflux you’ll have to ride it out. I left feeling so deflated, every diagnosis someone was giving us we were told to ride it out, no advise, no medication to try and control it, nothing.
Week 7 we went to the health centre to get Bryony weighed and she was 10lb 11oz bang on where she should be, I was happy of course that she was gaining weight during all of this but the health visitor could see I was distressed and despondent and asked me to talk her through what was going on in my head. So I explained all of the above and straight away she said ‘cows milk protein allergy’. It hadn’t even occurred to me that lactose isn’t the only thing someone can react to in cows milk, the colic products I was using were breaking down the lactose in her formula but not the protein. She said to go to the doctor immediately and get a trial prescription from a hypoallergenic formula called Nutramigen. I went to the doctors where I saw a third GP and he examined Bryony, her blood oxygen level was below what he would like, respiratory rate was fast, blood pressure fluctuating but because she was gaining weight and still having wet and dirty nappies, he wasn’t worried at the baby crying so hard in front of him her cry had become silent. “I’m not going to give you the formula I’m just going to refer you to a specialist paediatrician and go from there.”
I asked what I should do in the meantime regarding her feeds, as surely he couldn’t leave her like this? “Just keep her on whatever she’s on for now and the paediatrics team will advise you further, the appointment can take up to 3 months to come through but I’ll ask them to fast track it but there are other mums out there with babies suffering worse, so don’t expect it to be tomorrow”
I left mortified but determined to help my little girl, I managed to track down Nutramigen in a local pharmacy and within 2 days her symptoms started to fade. She smiled for the first time at 7 weeks when she was awake and not crying but actually looking at you I cried so hard that day I saw she had blue eyes just like her dad and even though she’d had such an awful start to her life she could still smile through it, how had my beautiful perfect girl been let down by one of the worlds leading health care systems?
She had her paediatrics appointment 6 weeks later (last Tuesday) she was 11 weeks old and although her reflux was still bad she didn’t seem too upset by it; it was more the hiccups she got from it that caused the discomfort.
At this point it was costing me £50 a week to give Bryony the formula she NEEDED in order to live a relatively comfortable life. Now we are nearly 12 weeks old, finally a prescription for Nutramigen and a thickening agent to go along side it to help Bryony with her reflux and she is thriving.
Yesterday at 12weeks 6days she rolled from front to back, she smiles as soon as you pick her up in the morning and is so nosy she loves looking at her surroundings!
We have been advised to wean her from 4 months which will hold a whole new set of challenges making sure we are so careful about keeping an eye on her milk allergy (I’m vegan so I’m careful anyway) but also watching for reactions to other food items.
I’m so upset that we were let down by the NHS but my girl is no longer in pain and that is all I can ask for.
A mother’s instinct is always right and I’ve now got a whole new confidence to fight for my baby when no one else will.
