Jaundice Admission and Bressure

The morning after we came home from hospital, we received a visit from the community midwife. I have to admit, I was very nervous about this. During my short experience with midwives in this area before changing hospitals, we had found them to be extremely judgemental and not helpful at all. You can read about those experiences in This Post.

A warning. This post is LONG.

The midwife who came over was one that we hadn’t met before, so I was pretty anxious, but it turned out that she was lovely and not judgemental in any way. No judgement about us being a lesbian couple, no judgement about the choice to formula feed and she gave us some great support and information as well as giving Eden a good check over. She noticed that Eden was looking a little yellow in the eyes, so she advised us to head to hospital for a jaundice check.

Because of the positive experience with the midwife, we decided to head to our local hospital rather than the one that Eden was born in. This turned out to be the biggest mistake I could have made and the start of a very difficult forty eight hours.

It started out ok. We arrived at accident and emergency as advised by the midwife and were sent through to the childrens’ section. We were seen very quickly by a lovely nurse who then sent us to the childrens’ triage department. There we waited a little longer, giving Eden a feed in the mean time as it was her feed time. I had brought enough formula with us for three bottles as I didn’t imagine we would be there any longer than nine hours. We were soon called in by a dr who examined Eden and agreed that she was looking a bit on the yellow side so they needed to take some bloods. Eden was an absolute superhero in that she of course did cry a little bit but she didn’t totally freak out. Even when the dr had to prick her heel several times to get the blood that she needed. We were told to go off and get coffee and come back in an hour or so for results.

Amy, Eden and I went for a wander around the hospital and grabbed a coffee. After a little while we headed back to the triage area and were called into another room by the same doctor. She told us that unfortunately, the blood from Eden’s heel prick had clotted, so they needed to take more blood to get the results that they required. She said one of the registrars wanted to try to take the blood from Eden’s hand, which she advised us would be more painful for Eden but would make getting the results much easier. We agreed and they inserted an IV into Eden’s hand and took blood from there – remember this for later.

We sat for a little while longer and the dr came to us with the results. Eden’s number was 265, and the treatment boundary was 250, so she would need to be admitted for light therapy. This was where everything went pear shaped. We were told to wait in the waiting room while they found a bed. The medical registrar was reading Eden’s details down the phone to a ward. Now, bearing in mind that this was the same registrar that had JUST taken her blood less than fifteen minutes ago, I was very surprised to hear her referring to Eden repeatedly as “he”. The dr then came back to us and told us we needed to go to the special care baby unit, which was part of maternity. They would be expecting us there and would have a room ready. I asked how long we would be being admitted for and she had absolutely no idea. Gave no answer at all.

We headed up to maternity and paced the corridor, unable to find the SCBU. Reception was closed, but we eventually managed to stop a passing dr and ask where SCBU was. Turned out this hospital doesn’t have a SCBU – it’s called NNU there… So we headed into there. Reception was closed there too, so we waited and waited and waited whilst staff ignored us. Then someone finally acknowledged us and when we told them we had been sent up from childrens’ triage they told us we weren’t meant to be there as they only accept referrals from maternity. They were ready to send us all the way back to triage, until a forward thinking midwife decided to call down instead and find out where we were meant to be. She soon came back and told us that we were supposed to be at the “Postnatal ward”, which was at the other end of the corridor. We thanked her and headed to the other end of the corridor, where there were a few wards. None of them were labelled postnatal.

Again we had to stop someone and they pointed us to “Ward 7”. Nowhere did it say anything about this being a postnatal ward, but when we walked in it seemed we were in the right place. Thankfully half way down the ward corridor there was a reception desk and thankfully, this time there was someone sitting at it.

Now, put yourself in our shoes here. By this point it was ten o’clock at night. We were both exhausted, having been up all night with a newborn. We were emotional, having just been told that our baby wasn’t well and I was in pain thanks to my stitches from giving birth.

So, imagine how we felt when we saw a sign that said “Queen Elizabeth Hospital does not support artificial feeding and will not supply teats, bottles or formula. If you need help breastfeeding, please speak to a midwife.” I said to Amy that I wanted to take Eden back to the hospital where she was born rather than staying here, but it was at that point that the midwife on the desk acknowledged us. Turns out this was where we were meant to be, and she said they had a room ready for us – fab. Needless to say I was pretty upset about the formula situation at this point, having worked out that we only had enough to last us until 2am. The midwife asked why I was upset and I said I couldn’t believe my baby was expected to starve. She said “no. We do have formula. We just don’t give it out unless the baby is ill. I can give you some this time.” and reluctantly handed over a single serve bottle of formula. Fine. We were sorted for the next feed.

We were shown into our room for the night. Basic hospital standard really, although I wasn’t impressed at the mould on the shower curtain or having to wipe off the remains of someone’s dinner from the table. No one had really told us what the plan was at this point, so when the midwife came in and told us to strip Eden off we did just that. Whilst doing that, she asked what Eden’s name was an we told her. At which point she said “isn’t that a male name?” Charming…

Once Eden was stripped off down to her nappy, they brought in the incubator and then realised they needed to heat it up first. Luckily we had brought a blanket with us, so were able to wrap little miss up nice and warm until they got their act together. The midwife came back with wristbands for me and for Eden. She asked me to confirm my details, which I did. She then asked me to confirm Eden’s and I said “Eden [surname]” and she said ” We’ve just put baby [surname].” Why bother asking then?

Before Eden was put in the incubator, she was given an eye mask to wear. “Preemie” size, so obviously too small for her. We mentioned this, but were told it was ok. Of course it was slipping off every five minutes, but who are we to correct a medical professional? Luckily and thankfully, Eden didn’t mind being in the incubator so much and was perfectly happy in there. She wasn’t thrilled about the mask, but was ok with some comforting.

By this point I was very upset. I didn’t even have sanitary pads with me. Luckily I had brought my painkillers with me, so we were ok in that respect. But by now it was 11pm and we had NOTHING. There was only one shop in the hospital and no inpatient pharmacy, so nowhere that we could purchase formula or even some food or drink for either of us. The cafe that we had gone to earlier was now long closed, it being 11pm at night. Thankfully a friend was in the area and dropped by with a phone charger and some sanitary towels, so I was saved from bleeding everywhere and phone dying. Amy was thankfully allowed to stay as well. Nothing nearby was open by this point, so there was no way for us to get the formula that we needed for Eden.

Through the night no one dropped in. I didn’t get any sleep as I kept having to comfort Eden and had to go out and ask for formula a couple more times bearing in mind she was feeding every three hours. They had told us how important it was to make sure she was fed every three hours to help flush the jaundice out of her system, so I was very confused as to why we were basically having to beg for formula each time. The second time I asked, the midwife offered Amy an empty bottle for me to express into… Needless to say that did not go down well and there were a lot of tears on my part.

At around 4am a doctor came in to take yet more blood from Eden to see how the levels were and if the photo therapy was helping. Remember the unusable results from yesterday? This is where things go odd. The dr told me that yesterday her results went up very quickly from 265 to 300. I said that was odd, because she had only had one set of usable blood taken. The first lot had clotted. The dr told me that that was incorrect. They had managed to get a result from the first sample of blood and from the second one too. Remember the second one? The one where I consented to a painful procedure for my baby girl? Yes, that one. The one that it seems now wasn’t needed. I was incredibly confused by this point and when the dr left (with Eden’s blood…) I asked Amy if I had imagined what she had said. So, I consented to a painful procedure for absolutely no reason as the first bloods HAD been usable?

We were told the blood results would be back in around two hours, so we decided that Amy would wait with me until we had the results and then would go out and pick up some formula and some other bits that we needed at the hospital. At some point someone knocked on the door and shouted “breakfast” and then disappeared. I was pretty amazed that they were willing to feed me, but feeding my child (who was the patient) was something we were having to fight for just because we were formula feeding. No one told me where to go for breakfast, so I didn’t bother. Amy nipped down to the cafe and the hospital shop again to see if by any chance they had got formula in since last night, but they only had follow on milk. She did bring coffee back up with her, though.

So, we settled in and waited for the blood results. 10am came and a midwife came in to do observations. Now, I have to say that although we had an awful experience at this hospital, this midwife was fantastic. She was lovely, inclusive and answered any questions that we had. I also mentioned to her that we had had trouble getting formula and she went and got us a bottle ready for Eden’s next feed so that we didn’t have to ask for it again. I asked her about the blood results and why I had consented to a second set when the first set had been usable, and she said she had no idea but would ask one of the doctors to come and talk to us. All of Eden’s observations were fine and she actually did ask me if I had pain relief as well, which was appreciated.

At some point during this, someone brought water in. We had been without all night. Bearing in mind that the hospital that we had Eden in would be constantly bringing water and you would get told off if you didn’t drink it, this was odd to me. Both NHS hospitals yet so very different.

Anyway, so we waited another couple of hours for the doctor. Amy was getting tetchy at this point as she really needed to get out and get us some formula, but because there might be decisions involved relating to our child’s health she wanted to wait for the dr. Thankfully about midday (around the time someone stuck their head through the door, shouted “lunch” and left again…) the dr arrived with Eden’s results. The levels had dropped, but not enough for her to come out from under the light yet. I asked about the miscommunication with the bloods and the dr basically brushed it off and said we must have misunderstood. No offer to investigate it.  No “I’m sorry that happened” and no understanding my concern. I asked him straight out at this point if we could be transferred to the hospital she was born at. He said he would ask his superior.

I was amazed that at this point that was no apology. No one seemed to care that we had been given incorrect information. No one gave a crap that we had consented to a procedure on incorrect information. No one cared.
With them telling me there was no result from the blood that supposedly clotted, that was the information I used to make a decision for my child. In this case it was just a more aggressive way of getting blood, so not the biggest of deals. But I feel that part of their jobs as medical professionals is to enable parents and guardians to make the right choice for their kids by providing the most up to date information. There was no need for that second lot of bloods. I said yes to that for no reason because I was given incorrect information. That’s no big deal right now because it’s not life and death, but what if it was? What if the decision WAS life or death? Would they give me all of the info then or just a half assed attempt? I cried a lot, which seemed to be a pattern during our time there. Once I had calmed down, Amy went out to go and get formula and a change of clothes and such. Luckily my hospital bag was pretty much still packed from giving birth, so she said she would just stock that up and then bring it back.

While I waited for Amy to get back a lady came in from Bounty and gave me a pack filled with free samples and things. This was great timing as we were basically about to run out of nappies and there were some in the pack, so that was appreciated. While I waited for Amy to get back I sat and played on Facebook and had to comfort Eden a couple of times as she wasn’t enjoying the light box today. At one point I had the side of the incubator open and my hand on Eden’s arm and was shhh’ing when a Maternity Support Worker came in. She just marched over and said “I need to talk to you about the milk situation.” Needless to say, I was quite taken aback. I said “which is…?” And she told me that they would not be supplying any more formula because they “don’t support artificial feeding” and “we shouldn’t have given you any at all really.” I told her it was fine because Amy had gone out to get some milk, but she drove home the point that they expect women to breastfeed and would not be giving us any more formula. By this point I was pretty much ready to tell her to sod off, but thankfully she left. At which point I lost my shit. I sobbed and sobbed and sobbed. I called Amy and sobbed down the phone to her and thankfully she was almost at the hospital.

Why did I sob? Because once again I was being made to feel totally inadequate because of our choice to formula feed. I don’t know what they expected – if they with held formula I would just magically decide I wanted to breastfeed? No one actually asked why we weren’t breastfeeding. For all they knew I could have had a double mastectomy. No one wanted to actually find out the reason or offer to support us if we wanted to start breastfeeding, it was all just about berating us for not doing it and for asking them for formula. It’s not like it was hard to come by – they had boxes full of formula. They just didn’t want to be seen giving it out, lest it gave the other women ideas – at least that’s how it felt. I felt like a total leper for the choice that me and my wife had made for our child. Also, I had a look at my notes and it was written in there that “mum didn’t bring any formula.” Pass the mother of the year award… Actually mum DID bring formula. Mum brought two bottles because mum didn’t think she would be at the hospital any longer than six hours. Obviously mum needs to better utilise her psychic powers next time…

At some point during me losing my shit the dr came back in, but Amy asked if he could give us a minute and then come back, which he did. We were hoping he’d have news for us, but it turned out the blood had clotted again and he needed to take more. He was apologetic about it and assured us that the blood actually had clotted this time. So our little girl got another prick in her little heel. By now she barely flinched when they did it. Little trooper. He assured us that if the results were below the treatment line, she would be able to come out from under the lights, so we crossed our fingers. The Dr also updated us that he had spoken with the hospital that Eden was born at and they had said no to the transfer because they don’t have any beds, but also because Eden was better off finishing her light therapy there rather than coming out from the light box to travel which may have been detrimental to her recovery. I thanked him for calling them for me.

A few hours later a midwife came in and said she had great news – Eden’s numbers were well below the treatment line so she was able to be liberated from the box and upgraded to a crib. We still needed to stay in for another few hours so that they could recheck her levels and make sure they were staying down, but she got to come out of the incubator, which was great news. It was good to get her back in clothes and be able to cuddle her whenever we wanted, rather than just feeding and putting her back in the incubator.

We had a slightly better night that night. She was a lot more content in the crib than she was in the light box, so we only had to get up every three hours to feed. I had also tracked down water on the ward so had been able to refill our jug as many times as we needed. Amy had also brought the premix formula so we didn’t have to worry about begging for our child to be fed. Ironically, they had offered me food three times a day. I wasn’t the patient. They were happy to feed me, but not Eden who was actually ill. Figure that out.

The next morning she had more blood taken and we awaited the results. During this time the lovely midwife came back in again and had a chat about what would happen next. If her levels were down, we could go home. If they had gone back up she would need another twelve hours minimum under the lights. Again, we had our fingers crossed. I was ready to get out of this place now. Unlike every other midwife who asked “you’re breastfeeding, right??”, this midwife remembered that we were formula feeding and was more interested in how much Eden was taking and how often, which is the way it should be if you ask me. Drinking plenty is part of the treatment plan for jaundice, so I think regardless of method the important thing here should be that babies drink plenty. This midwife seemed to be the only one who was on the same page as me.

Thankfully a couple of hours later we got her results and we were ready to go home! Lovely midwife asked us to wait whilst she prepared my discharge summary and then we were good to go. It was while we were waiting that the maternity support worker came back in. She said “I have another question. Has she had ANY breast milk?” I told her no. Believe me, that wasn’t what I wanted to say, but I also didn’t want to lose my mind again.

After an hour or so we had packed up our things and we were ready to go. I almost skipped out of that hospital I was so glad to get out of there. It was a total contrast to the hospital in which I had given birth to Eden. Absolutely horrendous.

Seriously. I don’t know how many times I had to explain that we weren’t breastfeeding. I don’t know why people couldn’t communicate. I even had a midwife ask me if we were breastfeeding WHILST I was feeding Eden a bottle of formula. The whole ward was filled with posters about how “everyone can breastfeed” (not true) and “the dangers of artificial feeding”. That’s right. They wouldn’t even refer to it as “formula feeding” – just “artificial feeding”. Like it was unicorn tears or something…

Don’t get me wrong. I understand that “breast is best” and I have no issue whatsoever with NHS Trusts and health care professionals promoting breastfeeding – after all it is what nature intended. HOWEVER, my issue is when breastfeeding is rammed down your throat and anyone who feeds any other way is made to feel inferior. No one asked why we weren’t breastfeeding. No one took any interest in us or the decision that we had made. Had they actually bothered to ask, they would have seen that we made the decision based on personal circumstances and with a lot of thought and research behind us. They would have seen that if I was able to breastfeed, it would have been very damaging to my mental health. But they weren’t interested enough to ask or care. I’m a big believer in patient choice and I think families should be supported HOWEVER they choose to feed. There should be support available to ALL parents. Because let’s face it, there are things to be aware of with formula feeding too. Some people don’t know how to safely prepare a bottle or how to make up formula. The hospital we had Eden at actually gave us information about this, thus supporting us in our choice for our family.

As someone who chose not to breastfeed for many reasons, I found the ward incredibly distressing. I can not imagine how upsetting it must be for those who want to breastfeed but can’t for whatever reason. That “bressure” is insane in the mommy communities and healthcare professionals shouldn’t be perpetuating that. Forcing women to breastfeed is not conducive to having happy, healthy babies and mummies. The thing is that it’s their prerogative to have whatever policy they like, however they have to account for situations like we had. We were admitted at 10pm. We had only brought enough formula for six hours as we didn’t think we would be out longer than that. I understand if they wouldn’t provide formula for a planned admission and if they tell people in advance and they still don’t bring formula, that’s their problem. But I just think the situation we were put in was disgusting.
Neither of us drive so we couldn’t just “nip out” and get some and our nearest relative is forty five mins away. Plus, and this is the clincher for me, they HAVE a cupboard absolutely filled to the brim with formula. What is the harm? With a diagnosis of jaundice, it was important that Eden drink as much as physically possible to try and flush it out. They gave us the talk about how important it was to feed her exactly every three hours, but then made us feel guilty for asking for formula. I said to Amy that it’s lucky that we are a confident couple who will ask, as I would imagine that with the way they made us feel there would be some people who would feel they couldn’t ask for the formula they needed and would end up putting their baby’s health at risk. It’s just not helpful in the grand scheme of caring for her. Surely making sure she got as much as possible is more important than tick boxes and targets? Apart from anything, had I agreed to start breastfeeding at that point, chances are we would have had to supplement with formula anyway as I wouldn’t have been producing enough for what she needed to get better.

One of the reasons that they push this is because they are accredited under the “UNICEF baby friendly initiative” which promotes breastfeeding and stops hospitals “promoting” formula feeding by even discussing it. Funnily enough, the hospital that we had Eden at are also accredited under this scheme and still managed to support patient choice. You can promote breastfeeding without making everyone else feel like crap.

It also infuriated me that that they were willing to feed me three times a day but not provide formula for Eden. I’m not the patient. I could have (and mostly did) sorted out my own food. She IS the patient so if they should have been spending NHS money feeding anyone it should have been her. I wasn’t sick. I sorted out my own food. There was no reason why the hospital needed to feed me. Feed the damn patients.

I’m in the process of writing a complaint about this to the hospital, because I feel the way we were made to feel was disgusting. It cemented the decision that we made early on to move from this hospital. We had such a positive birth experience and I can’t imagine how negative it would have been had we stayed at this hospital. Only one midwife actually referred to Eden as “she” – everyone else seemed convinced she was a boy. From randomers I would have taken this – after all when a baby is just in a nappy who can tell? But these were people who were responsible for her care. If you don’t know your patient’s gender, what else do you not know? We were asked several times “who’s mum?”, which got annoying in the end. Especially when we got the “what the hell?” face when we said “we both are”. I understand they need to know who gave birth to her, but ask that. Don’t ask “who is mum?” when you have a lesbian couple in front of you.

I don’t know. I just think the hospital that we had Eden in was all about patient choice and all about empowering people to make informed choices for their family. It was an inclusive hospital, with great staff who paid attention. This one was entirely the opposite. Not inclusive and seemed to think it is acceptable to shame someone for how they choose to feed their child, even when at that point there is basically no choice. Threatening to starve children isn’t helpful really, is it? Support parents. Support families. That’s what makes a happy baby. Not feeding this way or that. Not any particular checklist of things. Families come in all shapes and sizes and make all kinds of choices. Supporting families is what’s important – particularly from healthcare professionals.

Anyway, I’ll update when I get a response from my complaint.