Anyone pregnant for the first time, have chronic health issues and worried how you will cope when baby arrives?

[swampusdonkus]

Hi, I am currently 18w with my first and have a chronic neurological condition called Idiopathic Intracranial Hypertension, which means I have an excess of cerebro-spinal fluid. This accumulates in my skull and causes pressure on the brain and optic nerves, along with disabling headaches and visual problems. I have a VP shunt which is essentially a bit of plumbing that diverts excess fluid to my abdominal cavity but it is not an exact science and I continue to suffer headaches that render me unable to move, major fatigue and sensitivity to light and noise. I have had these problems since the start of the pregnancy (but that is a whole other thread!) but what I am really worried about is how I will cope with a newborn. When I have mentioned my concerns to friends they have replied with 'well you just have to cope'... and while I believe that maternal instinct will drive me to do everything that I humanly can for my baby, I also wonder, well what if I am rendered incapacitated from the exhaustion of a newborn coupled with the extreme fatigue/brain squeeze I suffer from anyway? I am fortunate that I have a very supportive dh but he will be back in work after his short paternity leave.

So I was wondering if anyone out there has a health condition and is worried how it will impact on them when baby arrives? Or is there anyone out there who has experienced these concerns and can share their stories of how they managed? I would be interested to hear from anyone no matter what your health condition. Are there any organisations that could offer support? In some ways, just being able to voice these concerns and verbalise is very helpful.

Oh and if this thread would be better in the ante-natal forum let me know; I don't know where gets the most traffic.

Thanks in advance all.

have you mentioned this to your midwife? Theory goes they are meant to be able to put support in place for you. I had a c.a.f assessment done (not happy but another story) because of my mental health impairments and other things... Unfortunately for me its focused on the things i cant do (and them being concerns) rather than solutions and work aorunds to things i can do. Im on higher rate care dla. I entered into motherhood knowing its going to be tough but also knowing that i have the resiliance and problem solving attitude to get over most issues.
Focus on the postives. Evaluate what you can do and think about the gaps that you cant and find some way to fill them. Its difficult to predict with a baby, but iv thought of making sure theres somewhere safe to put baby down in every room because of my needs. (an example)

That sounds really difficult, OP.

I have an autoimmune health condition that can be debilitating if uncontrolled (Hashimoto's, which struck after my first pregnancy, and for a year until they got the medication right I felt as if I'd been hit by a truck and some days could hardly walk anywhere).

This time my lovely parents are coming to stay with me (I'm overseas) when DS is a month old, for eight weeks in total. By then I should have an idea of how my health is, and whether I need a bit of extra support. The aftermath of birth can cause one's thyroid to go bananas, and it can take a while for the balance to swing back to normal.

Are you in a position to ask for some family help? Or financially, could you afford a mother's help for a couple of afternoons a week, in the event your health falters?

Hi OP, I completely empathise. I have got SVT and epilepsy and both conditions have been causing me issues since I fell pregnant - I have been signed off since I was 10 weeks pregnant and am not allowed back. I'm now 27 weeks. Me and my husband had pre- conception counselling with both my neurologist and cardiologist so we knew what risks we'd be taking with the babies and my health but as soon as I got that BFP my first though was "sh*t, there's no going back now." My heart has been the main concern during my pregnancy but following the birth my epilepsy is going to be a huge factor and it is constantly on my mind. I'm at high risk of having seizures following the birth, initially down to hormone changes and peaks and troughs in my drug levels and then of course there are concern about sleep deprivation and how this can trigger seizures. I have been told I'm not to be alone with the baby (that made me feel very sad) so my husband has thankfully managed to get a month off work whilst things stabilise. I've also had lots of safety advice to try and avoid harming the baby, for example I'm not to carry him around the house unless he is in a car seat , I'm not to bath him alone and various other things. I feel like I'm going to be detached from the whole 'new mother' experience as I'm going to have to be supervised. I've also been told that I may not be able to breast feed (due to me not being able to get any breaks as opposed to if I were bottle feeding and DH could do his share). Wanting to breast feed is a huge thing to me so the fact it may not be feasible has also made me feel a bit crap. I'm very excited about the baby coming but the sheen has been taken off it a little by all the restrictions I've got and the fact that I'm not going to be able to just 'go with the flow' like other mothers can. But, such is life. I worry a lot about how I will cope and what will happen if my seizures are triggered off again (I have been controlled for 8 years) - it petrifies me to think about it if I'm honest and the consequences it would have. However, like I said, there's no turning back now and all I can do is cross my fingers and hope for the best x x

Hi,

I know how you feel, I have a platelet disorder as well as SVT. I was on heart medication until I found out I was pregnant and they have now had to stop it. Fortunately my SVT is benign and all I have to do is suffer the consequences of the unpleasant symptoms of having a high resting heart rate. This means I am now out of breath easily, I get palpitations and I suffer from dizziness. I've also had to accept that the natural birth I wanted is out the window because I am at risk of major haemorrhage during child birth. as a result of these conditions I suffer with chronic fatigue and I've developed migraines since becoming pregnant.

it's scary, but i'm worried more about what happens after the birth when I can't get the rest I need now. All I can do is take it one day at a time and deal with the complications as they happen. The hardest part for me would be to accept help from others because I like to be independent.

just remember that you need to take care of yourself and I hope everything goes smoothly for you xx

Hi sharkey- I hope you done mind me asking about your SVT, but are they planning on just leaving you with your symptoms? I came off my beta blockers prior to TTC (I was on Bisoprolol) as they were unsure if birth defects could arise. I was warned that my palpitations/high heart rate may return and if that happened then they would restart me on my medication. I wasn't having any symptoms until I hit 20 weeks and then I started having regular palpitations and my resting heart rate was continually high (I was checking my BP and HR twice a day). I was also breathless a lot and had a few dizzy episodes. I saw my Obstetrician who told me, after discussion with my Cardiologist, to go straight back on my Beta-blockers. So I'm back on the Bisoprolol now but only a 3rd of the dose I was on previously. I'm also having to have 4 weekly growth scans and will be having an ELCS as they don't want my heart under any stresses of labour.

Are you happy being left as you are or have they considered putting you back on medication?

Thank you so much for your replies x it really is useful to ‘speak’ to others in a similar position, as I don’t know anyone in real life who has experienced similar. I am thrilled to be pregnant and I am so grateful that it happened for us so quickly despite our, ahem, advancing ages, but I agree with Writer regarding how health issues can take the sheen off it all. But I think that trying to anticipate some of the potential problems, and coming up with solutions in advance is a very good idea.

Peeapod – I am under consultant care and so far they have been great but focusing on me being able to manage my symptoms which have worsened in pregnancy. She has said we have a lot of hurdles to overcome before I give birth and as I am still quite early days then we will deal with the ‘now’ issues immediately, whilst issues such as the elcs and ‘afterwards’ will be dealt with as I get further along. Good luck with your pregnancy; it sounds like you are taking a very positive approach to impending motherhood despite your health problems. And I hope that there will be more emphasis on what you can do and not what you can't re your caf assessment.

Stopgap – it sounds like you had a tough time with your first, but are taking positive steps and getting that extra support this time round. I couldn’t afford paid help but I have family not too far away. We are not exceptionally close but I know they would help if I was desperate. My condition is not as unpredictable as yours – that must make it harder in some ways for you as it is all an unknown.

Writer – that sounds really tough and it must be such a worry re: the sleep deprivation and the potential for the seizures to return. I guess new motherhood is an unknown and there is an added dimension of ‘unknowns’ that we additionally have to take in our stride. I may not be able to breastfeed either owing to the meds I am on and this really upset me, but I have gradually come to accept that I can only do my best and not to punish myself for factors out of my control. It sounds like you are going in eyes-wide-open and I am sure you won’t feel detached when the baby arrives, being so consumed by what you can do rather than what you can’t.

Thanks, Sharkey1187 – like you I had to accept that natural childbirth is out and a major worry is the fatigue – it is so debilitating as it is, and that’s without a baby in the equation! But I like your philosophy of ‘one-day-at-a-time’ and dealing with problems as they arise. I think it is a good idea to put things in place for when the going gets really tough, but otherwise I will try not to be too consumed by the ‘what ifs?’

Your replies were really useful – thanks - and I wish you all well with your pregnancies and motherhood!

Another one here! I have arthritis, a perforated disc, fibromyalgia symptoms (a whole different story) and anxiety and depression.
I am consultant led, have to see the anesthetist to check my spine as if I can't have an epidural I would need a general in the case of c-section, and have to continue with counselling etc.
In all honesty I'm terrified. I'm worried I won't cope with the 3rd tri physically and I'm really scared of post natal depression.
I'm still on high dose pain killers and antidepressant which causes me guilt and worry, but NSAIDS and propranolol have been stopped and I miss them!
My mum suffers badly with her arthritis so I know I won't be able to assume she can help when the baby arrives. Midwives are great but I'm still scared

Hi Sammi1986 , gosh you have a lot to deal with. How far gone are you? I am also on high dose painkillers which I feel major guilt over but it is a case of necessity to function and get through the day. The consultant has tried to reassure me that there is no evidence that they cause developmental problems (they can cause respiratory issues at birth but I am told there is an injection they can give the baby at birth to strengthen the lungs) but I am awaiting the 20 week scan with trepidation. Have you got other support available when baby arrives?

I'm 23+3 and everything is going perfectly. Baby is slightly smaller than average but growing well. Actually so far I'm considered a low risk pregnancy which I find pleasantly hilarious considering.
I hadn't been told that about the respiratory problems :/
I'm lucky I have a huge amount of support in family, friends and my wonderful man. I just have to make sure my pride and desperate need of independence doesn't get in the way!!
I was scared for the scan too, when is yours?

Hi Sammi1986 , that is all good news for you. It must be such a relief. The 20 week scan is such a milestone - mine is in two weeks time. It's great that you have such support too - and no shame at all in asking for help if needed.

In relation to the potential respiratory issues, they are specific to the type of pain relief I am on (morphine sulphate) - are you on the same/similar? The doctor has said that the morphine family of analgesics has been around for such a long time that it is one of the most studied and understood in relation to pregnancy. I think codeine is in the same family, and pregnant ladies can take that if absolutely necessary. My GP was also very nonchalant about it, and whilst she told me to stop taking the nsaids as soon as I discovered I was pregnant, she said that the MS was safer to take because the potential issues it caused were knowable and appropriate treatment could be given immediately if required. Obviously I hate being in the position of having to take such meds but I feel somewhat reassured that the doctors wouldn't allow me to take it if they were overly concerned. I would speak to your consultant when you next see him/her about the type of pain killers you are on and whether the above applies.

It would be good too if all who have replied posted a few updates along the way about how you are getting on, or if needed to come here and vent if it will help. All the best!