ITP Autoimmune Birth Plan; Labour with Low Platelets

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In the lead up to delivery, I thought a lot about Birth Plans with ITP.  Makes sense right?  We were about to have a little ITP Baby and I wanted to know what that meant, how my ITP was going to change things and what potential risks we should be aware of.

By simply writing an ITP Birth Plan, I was forced to research my options and educate myself about what may happen during our birth.  Even if no one ever reads our birth plan (which I doubt will happen) I know I will have gone through to process of preparing myself for all the possible options during birth.

I thought it was important to share my thoughts and planning, especially to help others get around this very huge time and to make a plan for themselves.

I felt wonderful after I finished writing my own ITP Birth plan.  Unfortunately, he came before I got a chance to read through the draft and get it printed.

So what is a Birth Plan?

A birth plan is a way of clearly communicating to those around you what you would like, need and expect during the birth.  Birth Plans usually include both your medical and emotional needs during labour.  They are a clear way to communicate your wishes and needs to your medical professionals, your labour support people and your friends and family.

This is by no means a comprehensive list of everything you need to consider – Think of these more as ideas and thoughts that will send you on your way to getting a great birth plan.  The following ITP Birth Plan is intended for those having a hospital birth.  If you are well enough to have a home birth then not everything below will apply to you.

Many might laugh at the mention of a birth plan.  “Planning your birth,” they quaff, “You can’t plan a birth, it will be however it will be.” – Not true.

Times have changed.  These days, women and families have options, choices and are taking more and more control over their birthing experience.  But there is some truth in the statement, “You can’t possibly plan how a birth is going to go.” So instead of thinking of it as a ‘Birth Plan’, perhaps think of is as your birthing intentions or strategy.

 

What Does an ITP Birth Plan Look like?

This was something that confused me for a long time, what does a birth plan actually look like?  Where do I write it and in what format?  This is the best answer I received…

A birth plan looks like a single typed piece of paper that can be read at a glance by a lot of people.  You print it out, bring it to the hospital, and hand it to your midwife or doctor or nurse when you arrive.

Birth plans are normally photocopied on arrival and inserted into your file so it can be read at a glance by each of your caring practitioners.

Keep it Short, Simple & Easy to Read

A birth plan will preferably be written in clear simple sentences.  Our midwife suggested dot points under simple headings. Labor | After the Birth | Breastfeeding | Hospital Stay?  You can choose the headings.

What to Consider when Writing your ITP Birth Plan?

Below are a few things to consider when making your birth plan.  It includes all the research I considered when writing mine.

  • Antenatal Classes – Parent Education classes.  Birthing Classes.  Breastfeeding classes.  Research which you would like to attend and book it in as early as possible.  They are all different.  Depending on where you do your Parent Education classes, will influence the advice you are given for writing your birth plan.
  • A Birthing Companion – Who would you like to have with you during the birth? What roles would you like them to play?  Is your partner primarily there to care for you?  Is your birthing companion familiar with your bleeding disorder?  Do they know your medical history?  Will they be an effective advocate for you if you are unable to speak for yourself?  Who is looking after your partner?  Who do you NOT want to be with you during the labour?
  • When to arrive at hospital? Many healthy pregnant women stay home as long as possible in the early stages of labour, before arriving at the hospital.  This is not always the case with ITP.  Be sure to ask staff when you should present to hospital. You might need a platelet count straight away.
  • Inductions – Because of my personal bleeding risk, as well as the combination of medication I was taking, I was counselled towards having a planned induction at 38 weeks.  Having an induction will allow the medical staff to create a more controlled environment for me to labour within, ultimately giving me the best chance of a natural labour overall.
  • Pain Relief –  Pain relief was hard to make a plan for – especially with my first birth as I had no idea what was coming.  I had no idea if I would be able to handle it? I didn’t know what my mental state would be on the day of the birth, so I researched everything and decided to include on my birth plan, ‘Do not offer pain relief until requested’.
  • Epidural – If your platelet count is too low you may not be able to or wish to have an epidural.  This is due to the risk of bleeding around the epidural site, which can cause paralysis.  If a caesarian is performed and you do not have an epidural you’ll be totally knocked out instead or awake.  Frown.  My medication was altered in the lead up to birth to give me the best possible chance of a higher count and to be awake.
  • IV Line – Would you like an IV Line inserted during active pregnancy so blood can be given quickly?  I have read online that many people are against having an IV line inserted as it is seen as a means of hospital staff being lazy.  But what about your comfort?  I personally would prefer being pricked with a needle once over being pricked 10 times!  If you or your medical team are anticipating blood and fluids being regularly received, then why not prepare for it?

ONE FIT MOM blogged about her experience with gestational thrombocytopenia and how she changed her birth plan with her Midwife as information changed.

We reviewed our birth plans with the midwife, and she recommended that A) I have an IV saline lock inserted during active labour to allow for an emergency access point if my blood volume drops precipitously due to hemorrhaging; and B) I allow them to give me a shot of oxytocin immediately after the baby is born, in order to stimulate uterine contractions and expulsion of the placenta, and thus reduce the risk of a post-partum hemorrhage. We agreed to both recommendations, as they sounded like reasonable precautions. ‘

  • The Third Stage of Delivery – Did you know there was a third stage?  The third stage is the delivery of the placenta.  Did you know that there is a drug that can be injected into you to make the placenta come quicker?  Did you know that your body does not need this drug at all to deliver the placenta?  Ask your doctors about this well before birth.
  • Staying in Hospital – Monitoring the baby and you after the delivery.  Make a plan in case this happens, ask what your options are if you badly want to go home.  We were very unprepared for the length of time we had to stay in the hospital.  While we talked about having to stay for about a week, the reality of it was very hard to deal with.  We should have prepared for food, laundry and support well before it was an actuality.
  • Emergency Plans – Unexpected situations.  The definition of an emergency is a serious, unexpected, and often dangerous situation requiring immediate action.  As soon as you make a plan for an emergency then by definition, it is not an emergency anymore as it is not unexpected.  It is simply a different thing.  While many people might consider having an Emergency Plan another way of expecting the worst, I found it incredibly calming and empowering to know I had a plan in place.
  • Things to include not specifically about ITP – Your intentions for breastfeeding, any special needs you have with regard to diets, allergies, religious or cultural preferences, previous medical history, and any kind of disability that requires special assistance.

For me, making a Birth Plan with ITP was about letting go of ‘the Perfect Birth’ and understanding the many possibilities and outcomes of my birth.  Making a birth plan with ITP was about understanding that there is no ‘right’ – or better way to bring this baby into the world; just the safest option at the time for myself and my baby (considering and factoring chaos and confusion into the equation.)

Our son’s birth was such a crazy adventure that I laughed out loud when I read over our ‘birth plan’.  But regardless of the fact we did not use it or need it in the end, the process of preparing, researching and putting together the birth plan gave me confidence and knowledge which lead to an overall calmer, happier and more informed birthing experience.

Recommended Reading – I recommend reading ‘Calling for BIRTH PLAN IDEAS‘ from a woman who wrote a comprehensive birth plan with ITP.

More on writing your own birth plans check out Belly Belly’s article WHY WRITE A BIRTH PLAN and The Bump’s Birth Plan TEMPLATE to get you started.  Remember these are just starting points for you to begin creating your own unique Birth Plan that you feel comfortable with.

 

The Second Trimester of an ITP Pregnancy

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Feature image from KELLIMURRAY

Everyone says that the second trimester of pregnancy is the best.  For me, this appears to be true.  Every single woman I talk to has a different story and opinion on being pregnant, but they all seem to talk fondly about the second trimester.  Perhaps it is the only universal experience that all pregnant women go through, a good second trimester.  

At the moment, I feel like I have always been pregnant; like I have lived this way for a lifetime.  I don’t think about the fact that I can’t drink alcohol, it never crosses my mind.  I have forgotten what it feels like to sleep through the night without waking to go to the toilet.  I can’t remember what my life used to be like or how my body looked before.  The hype of begin pregnant has calmed down and now it feels like normal life.

I have set my pregnancy books aside and stopped over analysing every bump and pain.  I am starting to feel like the baby is really stuck in there now.  The delicacy of the situation has ended and the solid thumping of a strong little human, kicking more space in my guts gives a healthy permanence to his existence (Yes, we found out we’re having a boy!).  

high risk pregnancy, fetal development, systemic lupus erythematosus, pregnancy complications, complicated pregnancy, high risk pregnancy complications, miscarriage, recurrent miscarriageThe best way to explain it is that I feel normal – It’s a new kind of normal but normal all the same.  The free fall of the third trimester has not yet begun.  My life now involves kicking and movements inside, a lot less sleep and I have noticed when people say hello, their eyes fall down to my belly and linger there, taking it in.  But that’s it.

Doctors – Going to the Doctors feels weird because everything is going so well.  I feel like I am wasting their time, but they keep wanting to see me, just in case, to check everything is still going well.  I am having blood tests every two weeks.  I am going every three weeks to see the OB team.  I’m getting ultrasounds every four weeks to check foetal growth and wellbeing.  It’s great to see him all the time.  Every time, he looks bigger and happier and more ours.

Medication – CLEXANE, Aspirin and 10 mg PREDNISONE.  Plus pregnancy vitamins, VITAMIN C and fresh juice.   Continue reading

ITP, The Questions Your Friends are Too Scared to Ask?

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Feature image from WEHEARIT (Apologies for the terrible spelling)

I know the feeling.  A good friend is sick and I want to be there for them.  I’m interested in their problems but their condition doesn’t quite make sense to me.  I’m not sure how to ask the right questions without offending them.  So instead I don’t ask.  I pretend I understand, nod my head and try to say positive things.  But all the while I’m thinking, it doesn’t sound too bad.  

Well, my friends were brave enough to ask the questions your friend might be holding back.  Here is one of our most honest conversations about ITP and how it affects patient lives.  It is also a wonderful insight into how others perceive ITP.  The answers to 12 questions your friends might be too scared to ask.

Q. Is ITP the same thing or similar to the disease that the heir to the Russian throne who was killed by the Bolsheviks, Alexei Nikolaevich, had? I think he had haemophilia? 

A. ITP is kind of similar to haemophilia, but at the same time very different.  While haemophilia is a hereditary disease, ITP is an autoimmune disorder.  Haemophilia is quite rare and will most likely affect men as it is associated with the Y chromosome. ITP is more prevalent in women. 

More people have ITP and it is overall more responsive to treatments, making ITP an easier disorder to live with day to day – but still just as dangerous in emergencies and accidents.  

Q. I understand that ITP has something to do with bruising. Bruising doesn’t seem that bad. I bruise every time I bang my shin against the coffee table. What’s the big deal? Continue reading

The First Trimester of an ITP Pregnancy

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Feature image from BABYCARLOTA

We are having an ITP baby!  I am currently 15 weeks.

The first trimester was pretty full on and things are only now starting to feel normal again.  It has been an insanely busy, stressful and at the same time slow 3 months.  We have already seen the baby three times on the ultrasounds.

I am still nervous just writing it down.  Everytime we go into the doctors, there is a little hesitation, doctors always cautioned us about the risks, to not get too carried away.  They smile, but they are always clear that this will be a long pregnancy and to not burn up all our energy in the first few weeks.  We will need a long game with this one.

Here’s a run down on what our first trimester with an ITP pregnancy looked like.

APS pregnancy, Hughes Syndrome Pregnancy, ITP Pregnancy, gestational thrombocytopenia, immune thrombocytopenia during pregnancy, breastfeeding with ITP, birth with ITP, ITP birth plan, low platelet pregnancyDoctors – We went to the doctor as soon as we found out we might be pregnant, which was 3 weeks.  It was as early as possible.  Our doctor was surprised the home pregnancy test even came back positive. 

Home pregnancy tests are getting more and more accurate, but they are not all the same.  On the back of the test, you can read how accurate they are.  Some of the tests are able to give you a positive three weeks earlier than others.  Don’t believe anyone who tells you they are all the same.   Continue reading

ITP Awareness Day Coming Soon…

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September is ITP Awareness Month.  And the last Friday of the month is Sport Purple for Platelets Day.  This year it’s on the 25th of September.  Yay!

To celebrate ITP AWARENESS DAY, ITP & Me will be launching HOW TO HEAL A BRUISE, an ebook about living with ITP.  Read all about it HERE

Here it is…

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HOW TO HEAL A BRUISE is currently available for preorder through AMAZON.

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Your Guide to ITP on Twitter

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Feature image from TWITTER

It is no surprise that ITP has made it onto Twitter.  There are a number of different people and organisations tweeting and sharing articles on ITP via #itpawareness #itp #itpproblems and #raredisease.  Here are a few people to follow, below

PDSA ITP SUPPORT


twitter itp, low Platelets, platelets low, platelet count, what is itp, low platelet counts, itp blood, itp platelets, itp blood disease, itp autoimmune disease, itp blogs, blogs about itp, bleeding disorder

@PDSA_ITP
Platelet Disorder Support Association – the premier source for information, treatments, and support for people with ITP, Immune Thrombocytopenia.

 

ITP SUPPORT ASSOC

twitter itp, low Platelets, platelets low, platelet count, what is itp, low platelet counts, itp blood, itp platelets, itp blood disease, itp autoimmune disease, itp blogs, blogs about itp, bleeding disorder@ITPSupportAssoc

UK Charity supporting sufferers of the autoimmune bleeding disorder Immune Thrombocytopenia.

RARECANDACE

twitter itp, low Platelets, platelets low, platelet count, what is itp, low platelet counts, itp blood, itp platelets, itp blood disease, itp autoimmune disease, itp blogs, blogs about itp, bleeding disorder@RareCandace

Disrupting the  space with Immune Thrombocytopenia (ITP).  FL Director @RareDiseaseUntd


 

ITP PROBS

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@ITP_Probs
ITP is a rare autoimmune blood disorder resulting in low platelets, I hope this page gets the word out and connects everyone through the struggle of ITP.

 

LYNETTE SHELTON

itp on twitter@killeygirl

Mum of Twins, adventurous, philanthropist, woman of many talents, ITP Patient (lack of Platelets) 12 years and still fighting to survive.