Lupus & Pregnancy
Lupus and Pregnancy – Anne Marie Pregnancy Diary
Having a baby while suffering with Lupus can be difficult and challenging.
Our Lupie friend Anne Marie kindly shared the diary she kept while expecting her beautiful baby James as a help to anybody already pregnant or planning to have a baby.
Week 3 and 4
I had been feeling a bit off the week before, I had no real appetite and my stomach had been upset. I found out on a Friday night with a home test that I was pregnant and I booked an appointment on the Monday morning with the GP. I had been planning to get pregnant and had came off all the medications that are unsuitable for pregnancy, I just take Plaqunil, Uniphilin (for my lungs) and folic acid, if you find yourself un-expectantly pregnant see a doctor immediately to ensure your medications are safe a low dose of steroids is allowed but Cellcept and Methotrexate cannot be taken. When it was confirmed that I was pregnant I was told the usual no soft or unpasteurised cheese, no pâté, no alcohol etc. It is a really strange feeling you are so excited, yet terrified, anything could go wrong or what if you’re not ready or well enough to be the best parent you can be. My GP organised the appointment with the obstetrician. Patients with lupus are monitored extremely closely the first appointment and scan are booked as soon as possible, a huge bonus as the wait to find out if everything is okay is significantly reduced. There maybe a few advantages of having lupus.
During week five there wasn’t much change certain foods really upset my stomach, I was suffering from constipation and bloating. Cooking smells like frying fish or sausages would turn my stomach or my own deodorant would send my out the door for some fresh air I felt so delicate, even a bag of chips something that I always loved the smell of I couldn’t stand. I never actually got physically sick but at times I really wanted to just to stop the nausea feeling. I had to buy a good soft bra as I started to become very tender and uncomfortable. I tried to start getting some regular exercise started it helps with joint pain in the long run and labour is shown to have less complications and easier if the mother is used to regular exercise.
Morning sickness is the wrong term! I woke up at half 3 to vomit luckily I made Kieran run for a basin it was extremely unpleasant (Apologies). Every strong smell now makes my stomach turn and someone only has to say the word fish and I start to convulse. I have always being a suffer of motion sickness but this is ridiculous, I was driving into town and got to the end of the road (about two minutes max) I had to pull over and open the door for some fresh air. Oh and ice cream is my favourite thing in the world it makes everything better.
I had my first scan this week it’s an hour to the hospital and sure enough I spent some time on the side of the road with my head out the door. I was with Kieran and he was driving which didn’t really help I tend not to get as sick if I drive. The scan was a real wow moment, when you see the little heart beating is just simply wow. I had been getting cramps for a couple of days and I was concerned but everything was looking good.
When speaking to the obstetrician he gave us the whole run down of the complications, basically having lupus can increase chances of nearly every complication pre-eclampsia, premature baby, miscarriage, still born, diabetes etc but these have to be made aware to you don’t get to worried or concerned it’s just to keep you as informed as possible. By simply eating healthy and having a stress free pregnancy can dramatically reduce the chances of pre-eclampsia and diabetes. All of these risks are reduced if lupus activity has been controlled for a minimum of six months, being as healthy as possible while pregnant is a huge advantage.
I tested positive for a anti-body called anti-RO or anti-SSA which can cause blood clots during pregnancy (mainly a concern in the second semester) I was to take aspirin and to inject myself with Heparin everyday these are blood thinners to reduce any clots forming. This anti-RO isn’t a huge concern once it is known it is present before you get pregnant and if u test positive once it is very unlikely it will turn negative unless you are remission for a long period of time. They did take a lot of blood and did every test they could think of just to have a comparison for the progression of my pregnancy. I have had lupus active in my kidneys previously and always have protein in my urine; I had to do a 24 hour collection to assess how much protein I lose in a day. They monitor high risk patients so carefully I will receive a scan every four weeks until week 20 and every 2 weeks after that. It’s preferred that lupus suffers don’t go to full term (40 weeks) this may not be the same for all patients but my obstetrician wants to induce me at 38 weeks. I hope to deliver the baby as natural as possible with no c-section I asked how possible that would be and was told chances are about 70% which I was over the moon about, All and all a pretty good day.
Week 8 and 9
I am so tired I could sleep all night and a couple of naps during the day too. Ice cream has become a constant part of my diet anytime day or night, and it can’t be ice pops it has to be ice cream that is very important! The nausea has not stopped I have not been sick just feel horrible, but on a check up with my GP she told me that nausea is good it means that there is a large amount of hormones in your body which is a sign of good pregnancy as your body prepares for what’s next. It’s thought that miscarriages occur because there was something amiss to begin. With a straight forward pregnancy most women wouldn’t have a scan until week 12 and the majority of miscarriages happen before 12 weeks, so the hope is that any abnormalities wouldn’t be detected before the miscarriage occurs.
I have had my twelve week scan and another 16 weeks scan and everything has been normal, I have been starting to feel big clothes aren’t closing anymore so I am wearing maternity clothes 24/7, this is the first time ever I am big and I love it! Lupus wise I feel fantastic I haven’t felt this well in years being pregnant must suit me. I can clean the house and go for a walk without collapsing on the couch when I am done. I had an appointment with my rheumatologist I was but on Imuran (immusuppresent) all for precaution. I am doing well he just wants to do everything to make sure I don’t have a huge flare further into the pregnancy. There is no way of knowing if it will work or not if I do have a flare who is to say it might have been worse if i wasn’t on Imuran or look at the opposite way if I don’t have a flare it might be because the Imuran prevented it or I was never going to have a flare in the first place. It’s all a bit of a gamble.
Week 16 and 17
This has been a tough few weeks; I have been feeling fine except i had a nasty reaction to the Heparin injections I was giving myself every day. I broke out in red, raised itchy patches were I was injecting myself; it’s all over my bump and my thighs. I was put on a different injection called Clexane and the same thing happened. It’s difficult enough to get an uninterrupted night sleep when I have to run to the toilet every couple of hours, now I wake up itchy and sore from scratching in my sleep. It turns out I am allergic to heprin and Clexane these are the only injections used for blood thinning during pregnancy. I still take the aspirin and it SHOULD be sufficient to stop any clots. To make things worse the itchiness is taken ages to settle down and my thighs and bump looks like I was beaten up there bruised and red luckily I won’t be showing them off anytime soon.
I was in Portugal for a week on holidays (last holiday for a long time) it was fab! I had a wedding to go to and the rest of the week was spent sitting (in the shade) by the pool and eating until i couldn’t eat any more. I had a bit of a swollen finger it lasted the day it was still there the next day but it was fading i was convinced it was going to blow into a full on flare but it didn’t thank god. First little bump in the road and it was very manageable.
Had a few hectic weeks had appointments in the hospital every week and I live an hour away from the hospital so I was wrecked from driving. I had regular appointments with my nephrologists and rheumatologist my kidneys seem fine i do have protein in my urine but i always have had some and my rheumatologist is amazed at how well I’m doing but wants to see me in two months just to keep an eye on everything. I had my 20 week scan were they do all the measurements of baby’s head/thighs/stomach etc and it was all perfect had my due date confirmed. I was asked if i wanted to find out the sex of the baby i decided not to it will be a nice surprise. The best thing about having all these scans is everyone gets to come and see the baby Kieran works full time so he doesn’t get to come to every scan, so i brought the two grandmothers instead they were delighted to see the baby.
It is Christmas and I am wrecked it’s always hectic in our house around Christmas and this year it’s no different. Between running to this place and that I haven’t had a chance to feel unwell. I spent the whole of Christmas day on the couch (cuddling the dog) eating my weight in chocolate sweets and not feeling guilty about it. No sigh of Lupus raising its ugly head and every week of a healthy pregnancy is raising the chances of survival of baby if the worst happens and has to b delivered early. Once over the 24 weeks babies’ survival chances are high between 80-90% so every week is a huge advantage!
I have noticed that I have a very small bump but a huge ass! Which leads me to think it’s a boy (old wives tale) but my gut feeling is a boy. I feel all big and awkward and something is telling me it’s a boy no real logic behind it. I had a mini scan after Christmas and meet a different doctor and he must not have read my file properly because he isn’t giving me appointment until February. The previous appointment I had was with my own doctor and I was told to come back in the middle of January so I rang and the secretary told me to come in next week just to be on the safe side. I have to say I am really being looked after by all the consultants and they are all sending letters to each other about my case my GP seems very impressed by it she said they all are really into my case guess. I have been at the hospital every week with appointments and everyone knows my case. I very lucky in one sense high risk pregnancy but if the slightest thing even looks like its going wrong there on top of it straight away.
This week I had the appointment I was supposed to have a week ago and I was scanned and this is around the time they check the Doppler levels. This is the flow between the mother and baby, the pick a part of the umbilical cord and asses the flow. This essential tells you how well the placenta is working high Doppler’s levels can mean the placenta is under pressure, low Doppler’s can mean the baby isn’t getting enough blood flow and oxygen and there can be an absent flow which means there is a point every now and then were the baby isn’t getting blood flow. When these occur they usually test urine and blood pressure. A positive test for protein in the urine, high blood pressure (anywhere above 140/80) combined with abnormal Doppler’s are all a sign of preeclampsia. When I was scanned my Doppler’s were slightly elevated, the baby was small measuring 2 weeks behind, I had protein in my urine and my blood pressure was leaning towards high (144/80). I was admitted to hospital . There were a lot of tears.
A 24 hour urine collection was done and I had to wait until the following day for the results. If they were similar to the results of the collection I did at the beginning of the pregnancy I could go home with the intention of going to the clinic twice a week for a check after that. But that didn’t happen they protein had increased from +1 to +2 I was staying put. I was giving a steroid injection to develop the baby’s lungs, as a precaution they are giving to all mothers who are at risk of their babies being premature.
Lupus makes everything complicated and they can’t actually say it is preeclampsia because it has very similar to the symptoms of lupus active in the kidneys, high blood pressure and protein in the urine. Either way I either have preeclampsia or active lupus in my kidneys which one do you hope for?
I am being scanned every 3 days, and i am getting more and more curious to find out the sex they ask every time do I want to find out it doesn’t help. There is still a tiny piece of hope of going home if anything improves, I get to go out every couple of days just for lunch but can’t go home because it’s too far away. What’s worse for the first few days there was a vomiting bug outbreak so I wasn’t allowed have any visitors I spent the days sitting in a hospital bed by myself that was torture. On the plus side all the midwife’s are lovely and I am finding out loads of stuff about pregnancy and all the different patients coming in and out.
There was only a small dramatic moment I was here about a week and a half and every morning and evening I am put on a foetal monitor to watch the baby’s heartbeat and movements. One morning i noticed baby wasn’t doing much moving and was put on the monitor for 10 minutes, the heartbeat was steady but no movements i was taken off and sent for a scan and still no movements during the scan. When i came back i was put straight back on to the monitor and another 10 minutes later still no movement. The doctor was called and came to see the monitor results he told them to prepare for a c section if the movements don’t pick up in the next 10 minutes i had an IV line placed in my arm and was prepared. Just as they were about to send me off the little fecker starts bouncing around the place like mad!!! I can tell already this baby is going to be a handful.
I am here until this little person decides to arrive! I am official institutionalised 5 weeks and counting. The entire student Doctors have been around to see the lupie one in the corner! I have been told on numerous occasions that I am such an interesting case I don’t think they realise that I DONT CARE! I would be just as interesting sitting at home on my couch. I did venture a trip home once, spent an hour there and cried the whole way back to the hospital, I didn’t do that again. I have seen close to a 100 woman come and go with their babies. I could write a book on all the drama of a hospitals ante-natal ward and it would be very entertaining. I became very good friends with one of the student midwife we just hang out in my little den. My blood pressure has slowly gotten worse and my protein in now +3 which is the highest it can go to, but still no idea of it being preeclampsia or lupus.
5 weeks now going from day to day no idea of a plan the consultant is caught as my Doppler levels haven’t gotten worse and the baby hasn’t stopped growing still (measuring 2 weeks behind) all good for the baby, but it means he can’t make a decision to induce or send me home. But because of the high blood pressure and protein he decided to have me induced (which is fantastic I can have baby naturally) on week 36 which is a Saturday. Being induced can take a couple of days so he will induce me on the Friday with the hope that baby will be here on Saturday. But that comes with its own problems the baby will be 4weeks early and small so the chances of me and baby going home together are slim. One extreme to the other I spent the last 5 weeks trying to get home and by the time I can go home I won’t want to.
I was induced on Friday which was week 35/+6 in pregnancy terms, I was giving a gel which is full of the hormone that jump starts labour and was to get another in 6 hours. I was fine having contractions and all spent some time in the bath (best pain relief I had was in the bath a tip for any woman in labour) after the 6 hours they put me on the monitor again and this time the heart rate was dropping every time I had a contraction. The baby wasn’t in distress yet but at such an early stage showing some signs of distress isn’t a good thing. It was c section time. I had told Kieran to work that day thinking nothing was going to happen but luckily he was giving a half day because of what was going on and had arrived at the hospital a half hour before hand otherwise he would have missed his baby being born.
Baby is Here!!!
On 1/3/13 at 4.04 weighing 4lbs 14oz, baby James was finally here. He was perfect I wasn’t expecting a chance to see him because they would normally bring babies born in those conditions straight down to the neo-natal ward but he was placed into Kieran’s arms and then on my chest it was so surreal but perfect. I was then taken into recovery and James was brought to Neo-Natal. He was kept in an incubator for a couple of days his lungs were fine due to the steroid injections I was giving, he was happy and healthy just small and need to be fattened up. I was able to stay in the hospital for a few extra nights to stay close to him but the day i was going home and leaving him behind is one of the hardest things i have ever done I would deal with lupus complications, pains, aches all that if it meant id never have to experience that again.
After I spent 6 weeks in hospital, James spent a week in the high risk and then was transferred to my local hospital so he can be closer to home. He then spent a week in that hospital and came home the day before St. Patrick’s Day. He is now happy healthy thriving baby, and it was all worth it the end.
To anybody with lupus who is or thinking about being pregnant there are a few things i would advise you do:
- Be as healthy as you can be before getting pregnant. The healthier you are the healthier the baby will be, being the mother going to the hospital to visit a baby is a horrible experience and I only did it for two weeks.
- Get tested for Anti-Ro antibody. If you have the Anti-Ro then it needs to be known in advance. ALSO when the baby is born make sure their doctor checks there heart with a monitor or even an ECG. Anti-Ro can cause a heart block in your baby.
- Take extra care you as a lupus suffer are more likely to have more complications than a usual pregnancy.
- Enjoy it! My pregnancy was cut short and I do miss my bump. It’s a privilege to be pregnant and the more you are well and take care of yourself the more likely it will go well.