It's hard to know where to begin really. I've debated over and over again, should I have a blog but it's such a big thing and I have found support from others. Like my partner, Lee says, whatever happens, maybe I can give somebody else some hope someday.
We are 30 weeks pregnant tomorrow, New Year's day. We found out June 27th, after trying for all of 2 months. I did the test, negative, got in the shower and when I got out, you could just see a 2nd line. And even barely visible, I knew what that meant. I always wanted this for a long time, and then I had Lee so it all just made sense really but as soon as that second line turned up, I just worried non-stop. I've had 10 scans to date. The first one was at the Royal Victoria Infirmary, (RVI) in Newcastle, at what we thought was 6 weeks and 5 days. Dr Moran informed us that we were actually only 5 weeks and 5 days, and that he had never seen a foetal heartbeat so early! Ellie was only 4.1mm (she is somewhat larger now!). We then had a private scan at 12 weeks, and our NHS one at 13 weeks, both fine. Two days later, I started to bleed so we rushed to the Wansbeck, thinking the 'inevitable' miscarriage was here, but no, she was still there, happy as Larry. I never really settled after that and it took forever until our 20 week scan but I was getting bigger and despite an anterior placenta, I could feel her from 19 weeks.
Twenty weeks and four days. Ellie looked perfect, measuring well, lazily floating, lovely little profile. The sonographer asked if I had been leaking or 'damp', to which I replied 'yes' (meaning damp, pregnancy is a disgusting time, let's face it!). I had leaked after sneezing and coughing during a cold two weeks earlier but we've all pissed ourselves. let alone being pregnant! She referred us upto the pregnancy assessment unit just to check our fluid level as she thought it was slightly low so off we went. Everything was fine until we went in the room with the doctor and he told me I had ruptured my membranes early. At twenty weeks, it would mean stillbirth, miscarriage, a huge risk of infection, etc. They did swabs and sent us away for five days, our world having ended. Those five days were filled with clinging to hope that wasn't there, me obsessing over my temperature,, being so terrified I couldn't even barely do anything. How we made it to the Monday I don't know.
We went back at 21 + 2, thinking we would be terminating. Our consultant at the time started scanning and couldn't believe it. Our fluid level was 11.1 cm, the mean being 16 cm and baby was fine. We were elated, and she sent us away for 2 weeks. We went out to celebrate and things were fine until the next day when shock kind of set in. I've never been so low in my life, or so anxious. I always thought panic attacks were a bit OTT but now, I know the fear. I pulled through it, but I went to seek help from the GP though I am still waiting for my first appointment with the psychologist. Two weeks later, the consultant was happy again, growth was perfect and our levels were 10.2 cm, not a difference worth noting as the baby has to swallow the fluid and pee it back out. Come back in two weeks, righty ho. In this time I had a few trips to the PAU as I was convinced I was leaking but there was never any evidence. It made me paranoid all the time. At 25 and a half weeks, our fluid was 6.5 cm. This was starting to bother me but the Doctor was still happy. She believed the problem was production related, therefore to do with my placenta, but the dopplers were all perfect and growth just dictated otherwise. Nevertheless, I went with her word. There was no reason to believe otherwise. What did bother me was the fact that if my placenta wasn't functioning properly, that left me at risk for pre-eclampsia so back to basket-case.
27 and a half weeks. It's still like a horror film in my head. I keep telling Lee, 'I don't want to go, every time we go it's worse' and he reassures me things are going well. I get on the bed, and they ask how we've been and we make a joke about how she never stops moving. She puts the ultrasound on my belly and Lee says something like 'Is the little git still breech' but you could cut the tension with a knife as the Doctor says 'Yes and unless she starts weeing soon, she'll be stuck that way'. I knew in that moment and I couldn't look at the screen. The doctor reads out the numbers 1.9 and 3.6 making a total of 5.5 cm though she only documented the 3.6 cm in the end, I don't know why. I get off the bed, go to do a urine sample and my BP and when I come out of the toilet, the Doctor has 'popped out'. She comes back and tells us we'll just pop into a room round the corner where we can 'talk'. Sounds great so far! She takes us into a room and I hear 'echogenic kidneys', 'oligohydramnios', 'sorry, the kidneys have looked fine until this point, we had no reasons to believe'. I say to her 'no kindey function is incompatible with life isn't it' and she nods but tells us she has refered us to fetal medicine at the RVI, and our appointment is 2 days later. For the second time, we have lost our child. Not once, but twice.
The days in between appoinments is relatively normal given the circumstances. Lee's gran was in hospital following a severe compound ankle francture and we were having problems with her at the hospital and all their drama. The first time we thought Ellie had no chance, his grandad asked him almost instantly 'Did you get my money?'. This time they have been more concerned about alcohol and this and that. I try to avoid going there as his gran goes on about all this baby stuff and how she can't cope with it and blah blah blah. I won't dedicate anymore of this entry to them because Ellie and Lee are my only real concerns currently.
Twenty seven weeks and six days, we go first thing in the morning to fetal medicine at the RVI, one of the most renowned hospitals in the country. The new Great North Children's hospital is amazing, complete with a 50 seat cinema! We get taken into a room and the midwife, Abby (who is outstanding at her job) makes us tea and tells us Dr Sturgiss, clincial director, won't be too long. I have since found out from my midwife he is one of the best in his field and is known round the world. He scans us, our fluid is 1 cm, and he asks me what we have been told and what that means to us. I tell him that our baby has a kidney problem, and that she will die. He replies, yes, there is a problem and yes, she could die. But she could live. There is hope. He measures everything and we return to the room to discuss things with him. In my research the day before I have encountered the terms 'Bilateral renal agenesis' meaning no kidneys of bladder basically. Incompatible with life. 'Hydronephrosis'-a blockage, in the kidneys, ureters or bladder (though in our case it would have beens the kidneys). This is what I was hoping for. The final one is 'Polycystic Kidney disease' I really hope it isn't this because it means it's genetic but what are the chances?!
As it turns out, quite high. Not only that, we have hit on for ARPKD-Autosomal recessive polycystic kidney disease. There is also an Autosomal dominant kind. In dominant, one parent is affected or a carrier and it used to be referred to as adult PKD as it often has a later onset. The child has a 50% chance of inheriting. It accounts for 85% of PKD. ARPKD on the other hand operates in the same manner as Cystic Fibrosis. Two parents who are carriers (i.e. us) have a 25% chance of an affected child, 50% chance of having carrier children and 25% chance of a totally unaffected child. Way to go, us two! Without two carrier parents, or an affected parent, the child can't have this disease so Lee and I are, therefore, carriers. ARPKD accounts for the other 15% and the odds are 1 in 6000 to 1 in 40,000, with a rough estimate of 1 in 20, 000 children being affected. 40% are diagnosed prenatally. 30-50% die as neonates due to pulmonary hypoplasia (underdeveloped lungs). I've read a lot more but it's so detailed and complex and rare, I just wanted to give a basic understanding for now.
So, Ellie has total renal failure. This disease is also associated with congenital hepatic failure (CHF) but we don't know how badly her liver will be affected or if she will need a transplant for that. We have a fetal med team, a renal team, a NICU team, possibly a community nursing team if she does well. It's kind of ironic that I dropped out a children's nursing degree and those parents I looked after at the RVI, I will be one of them, hopefully (as opposed to the alternative).
Dr Sturgiss believes keeping fluid until 28 weeks is positive. He thinks our chances for survival (primary concern is lungs) is at the top end 80%. The bottom end for most is 50% so when he said 70-80% I'm not sure if he meant with 50% still being the bottom percentage but whatever. He thinks our chances are better than most and the fact we have been so closely followed and this has been caught prior to birth is good as the NICU doctors will be on hand to whisk her away to be ventilated, etc. We have met with one renal Dr but are scheduled into a joint consultation next time with a fetal med professor and a renal consultant. At our initial appointment, Ellie was measuring well, her abdominal circumference was just hoving above 50th centile so not too huge and her lungs were appropriate size. At todays appointment, her cord was functioning really well, her kidneys don't look any different and she seems healthy (in accordance to her, not normal babies). Ok, her kidneys are still failing but they were only mildly enlarged last time, and if no different 2 weeks later that is good as we don't want them to get huge, press on her diaphragm, etc. Given the circumstances, pretty good news really. They want to let me go to term if possible and we are facing a C-section, as with no fluid, it's unlikely she can turn from being breech. However, there is still plenty of movement and the problem of being compressed doesn't seem to be an issue as we had fluid til she was nearly 3lbs so deformities, etc are not to be expected (that is a common thing in earlier oligohydramnios).
Wow, lot of info! So, xmas has been funny. I cry normally once a day and it's hard, trying to live a normal life like a normal pregnant woman but knowing all the while, we may not bring the baby home. It's always there. Our families and friends have been great but sometimes I wonder what they think. I mean, my mum was at the first appointment and yes, we were given hope back. Then she tells me Xmas eve, 'Audrey has sent some more baby clothes, do you want to have a look?' Um no. Or somebody says, 'Our baby was born 7 weeks early and look at him now!' Right. But don't his kidneys work? People expect me to be normal or ignore it. I get so angry because people whinge on about stupid things, or their kids doing this and that and I just want to hit them and say, 'you are so lucky'. All the while, I pray every night for people less fortunate than me because there are. It's about perspective. Anytime with Ellie is a blessing and if the worst does happen, she will go with her mummy and daddy there. I think of parents whose children have been murdered, or have AIDS and die through that or glue sniffing or whatever in Africa. It helps to get me through. Sounds stupid I know. It's about being realistic too. I can't pray every night for this to be a mistake because it's not. Is it a coincidence I started paed nursing then this happened? Perhaps, but I think maybe not. Maybe we were supposed to have the special baby because we can cope. Maybe she cames to us because we're so strong and a single mum with nobody couldn't have done it. I pray that she will have a chance, and I pray to be in the RVI parent club. Nobody would pray for that unless they were here but that's OK, it's our lot and we have a lot more hope than others. I know one family received terrible news today at fetal med and it wasn't us. We still have Ellie. I have to make that count for now.
My thoughts get jumbled a lot so I've started this blog to try and process them. I'm not going to waste my time trying to be Jane Austen, it's facts and feelings and very little embellishment or writing style but it's not about that. It's just so people know how we are and not to be afraid to talk about it. I would rather people acknowledge the problem and the positivity in it than ignore it and say 'oh yes, it's all fine' but at the same time' don't tell me how to feel and to be positive all the time because unless you are in this situation, you don't know. I hope you never know. What I know now is that whatever happens, Lee is the man I will marry. I left a man who wouldn't have kids to be with him, and now our child is sick but I wouldn't change it if I could because he gave me that gift. This happens to good people all the time, I know we aren't bad, and at least we have each other.
Our baby isn't healthy but she has a chance. She likes Billy Joel's 'Always a woman to me' and the left side of my body. She wakes up in the waiting room for an ultrasound as if she knows her close up is here. She has a nursery full of clothes and baby things that may never get used. Our baby might die but she's ours, we made her and if we have her for 5 minutes, 5 years or forever, she will be a blessing and it will be an honour for us to be her parents. Lee says she will be a nightmare, in 5 years, threatening not to take her tablets if we won't buy her sweets. That's the dream.
