Hi there,

I have an acute bicornuate uterus....one of several mullerian duct abnormalities (a malformation of the uterus). Bicornutate uterus is romantically labeled as heart shaped...its not the most sever malformation you can have but its nowhere near as happy as "heart-shaped" would have you believe. 

The acute part of the diagnosis refers to the fact that my uterus is very nearly septated (divided into two entirely separate uteri, another type of malformation).

I have had complications of this condition since I was a teenager and nobody picked it up until I became pregnant. I was told this condition is rare but have since found 12 women, 8 in my circle of acquaintances (including my aunt) and 4 more in random meeting (1 of whom, luckily, was the paramedic who came to pick me up when i was in labor...which will become important as you will see later in my story). I have also been told that there could be many more women out there with this condition who have no idea as it is hard to detect...which is sad because as in my aunts case, she wasn't diagnosed until I was, as she recognised my symptoms as being eerily similar to hers and she has never had children because they either miscarried or died in prematurity or still birth due to malformation all of which are common with bicornuate uterui and other mullerian duct abnormalities.  If she had been diagnosed she may have been able to get a cerclage (cervical stitch) and at the very least put off her premature births. 

When I was younger I was having very heavy, VERY painful periods which got much worse when my GP put me on the pill to try to help me.  We tried several types and in the end he suggested I try deporavera (the injection) which resulted in me admitted to hospital with sever anemia and low blood pressure after I had bled for six months straight. I had to have a hysteroscopy to stop it and needless to say, I don't take birth control anymore. 

The other symptom that I had endured during my younger years was urinary track and kidney infections....I only have one kidney.  The kidneys and the uterus form at the same time and when there is a problem with one there is usually a problem with the other. Many women with this problem, have only one or one fully functioning kidney. 

The frustrating thing about this is that all doctors can say is "we'll watch you very carefully and wait and see".....each pregnancy is different, even in the same women. It all depends on where the zygote implants, how the baby is positioned, how the uterus stretches and reacts to the pregnancy. Some women are lucky, the more pregnancies that have, the longer they go and some don't have any problems at all and go through to term.  Others, like my aunt, never have children due to the complications. 

My pregnancy story (and diagnosis) start in the 5th week of pregnancy, when I started to bleed. I was at work and left immediately for the hospital where I was admitted and had tests done to see whether I was miscarrying or not...the most upsetting thing for me was that I had only just found out I was pregnant and was being told that there was nothing they were going to be able to do if i was losing the baby.  I had several blood tests to gauge whether my hormones were changing, which they weren't, so I was sent for an ultra sound, where I found out I was definitely still pregnant, but the sonographer was going to need to get the doctor to see the results as something wasn't right.  I was released, only to be called the next day and told I needed to come back into the hospital to speak with the doctor about my results.  It was explained that I had a malformation (at that point it was hard to tell if I had a bicornuate or septated uterus, but as my uterus stretched it would become clearer).  She said I was to expect bleeding, possible miscarriage or premature birth, an incompetent cervix (and maybe need a cerclage), still birth, malformation of the baby due to lack of room, breach or transverse birth risks due to no room for the baby to turn around, pains in my back due to carrying more to one side and being lop-sided, painful braxton hicks and a difficult labor and birth due to muscles around the uterus not being in the right places and thus not able to contract properly (why my periods were so painful) and would most likely need a scheduled c-section.  I was to be considered high risk. I was scheduled for ultrasounds once a week, was told I should reconsider working on my feet (I was a restaurant manager at the time), should try to reduce stress and take extra iron and folate to help the baby and stop bleeding and anemia.  She also suggested that what ever the outcome of the pregnancy, I have scans every few years, as in some medical circles I was considered high risk for cancer.  She also told me that I should not panic, it may be that my baby and I were going to be fine.

So, I changed my job and took a demotion so I would have less stress (luckily I work in a hotel so I was able to speak with the GM and transfer to another department) and went for my weekly scans , at which they determined that I had a bicornuate uterus. By week 8 I was bleeding again and was admitted to hospital for more scans and blood tests. I found it a bit useless though, as there was nothing they could do if I was going to miscarry at this point.  Again, everything turned out fine.  The doctors decided that because I was pregnant in one side of my uterus the other side didn't understand what was happening and had built up a too thick lining of blood which it then had to discard or it would become septic (another thing I had to watch out for) but once the amniotic sac got bigger and pushed into the other side it should stop.  A really nice nurse told me to look forward to the 26th week as anything past this point was a bonus with a condition like this and it gave me something to aim for. 

I had a sever bleed in my 13th week which saw me in hospital for a week as I had become weak and my blood pressure had even started to drop dramatically, but again this stopped all by itself and the baby was fine. 

In my 26th week I had my baby shower as I had reached the milestone I had been told to hope for and I wasn't sure how much longer I was going to last.  I had had no problems since my 13th week and great ultrasounds showing good stretching of the uterus and had been scaled back to monthly, was probably not going to need to have the scheduled c-section and began to feel like maybe everything was going to be OK.

I was a work just after I had reached 28 weeks and began to get horrible cramps, I had been having painful braxton hicks all the way along but nothing like this.  They started out really far apart so I didn't even notice that they were regular until I got home that night and sitting in front of the TV I was able to time them and noticed they were getting closer together.  By 1am they were about 15mins apart and keeping me awake.  So we called the hospital and told them I was coming in.  They were ready for me and very concerned and I want to take a moment to say that all the hospital staff were always so wonderful they treated me really well and never played down my concerns and did everything they could for me always, however, apart from me telling them I was having regular cramps they could not find anything wrong with me.  They did blood tests, hooked me up to the machines and did checks with their hands to try to pick up the contractions, checked to see if I was dilating or if my waters had burst and nothing showed I was in labor (thanks to my poorly spaced muscles nothing was happening all together).  My cramps seemed to be stalled at 15mins apart, So, I was sent home at 6am.

I had to call in sick to work and tried to get some sleep.  At 12pm I tried to eat lunch and threw up. I began to get hot and cold flushes and the cramps got worse and closer.  I crazily thought I could hold out until 5pm when my husband got home from work and could take me to the hospital again but at 3pm I had to call an ambulance.  As I mentioned before, one of the paramedics has the condition and recognised that I was in trouble but that it might be hard to see...they still couldn't feel the contractions.  We need lights and sirens to get to the hospital as we live about half an hour away and it was peak hour. As it was, I made it to the delivery room with minutes to spare and gave birth in the clothes i came in in. My waters were bulging and didn't break until I got to the delivery room. 

Deakin was born a footling breach, born naturally (no choice really) at 28.2 weeks. He cryed (or mewed) as soon as he was born, all on his own and was a healthy (for his age) 1.375KG (3.05Lbs).  We were so lucky that he had no really problems bar being immature and is still developing well.

I want people to know about this condition, because it is so hard to pick up and there may be many women who have it and don't know and at least knowing would give you something to work with and may prevent a premature labor or at least put it off. You could advocate for yourself, I will be demanding to stay in hospital now if I have the cramps with my next pregnancy, as I know that its sometimes hard to see when I'm in labor and not let them take the c-section off the table so early.

There are a few ways of seeing if you have this condition and you're not pregnant. Being pregnant makes it easier to see as the uterus is being stretched out.  But you can ask for a hysteroscopy (which didn't work for me), a 3D ultra sound or something called a Hysterosalpingogram where they inject dye into the uterus and take an xray. I have never had one but apparently it is the most effective, if you are concerned and want to get tested.

It is also really important to have a GP and hospital you trust and can see if you think you are having problems, that will take you seriously....some people might not understand.

Advice (this advice is based on bicornuate uteri but hopefully people with other similar conditions can get something out of this)

Do not panic about the condition. Even though you are more prone to miscarriage, still birth, premature birth and growth retardation in the foetus, do not panic, each women is different and each pregnancy is different, even in the same women.  It all depends on where the embryo implants and how many pregnancies you've already had and how your uterus has and will stretch. You could go through 100 miscarriages and then get a perfectly healthy term baby. You may have bleeds, there could be nothing wrong they are very common and often don't mean the baby is in trouble (but get checked out every time, just to be sure!!!), don’t believe the worst until it is. There are too many variables to take into consideration to panic you might have the perfect combination to have a healthy term baby.

Don’t panic if the baby is premature the chances of survival are quite high nowdays (they vary depending on gestation) and permanent problems are not a certainty.

Your allowed to be sad!!!....chances are good you're not going to have the perfect pregnancy and this is sad, so its only natural to feel badly or imperfect. It healthy and natural to morn, for your self, your pregnancy and your baby if anything does go wrong (whether it be a small something or a big something).  Seek out people you can talk to about it, look for support groups (prem baby support groups are great and can give a heads up as to what sorts of things to expect if you do have a prem they can also lead to other with the same condition) and people who understand and rally them around you. Try to be as positive as possible and think about the good things.

Visit NICU and special care and speak with the nurses you will most likely spend time with them its good to know your way around before time and make it less scary and draining when you have just come out of delivery.

Do a tour of the labor and delivery suites and maternity wards (at a few hospitals ie if you have one that is closer than the one you have elected to go to in case you end up there in an emergency or if you think you will be transported, after the birth, to a city hospital).

Find out what the procedures are for transportation to a city hospital if your in a regional area as you may be move there after the birth if you or the baby have serious complications…again this will make it slightly less scary if there is a problem as it can happen pretty fast. 

Ask to do anti-natal classes early ie in early second trimester (you will most likely give birth early and its still a good idea to know whats going on down there, your options and the terminology/proceedures when it does happen and its one less thing to be confused and scared about)

Pack a couple of emergency bags (with just a few things to tide you over until someone can bring you more things) just in case and leave them in by the front door and maybe in a car…its hardly the time to look for things when you suddenly go into labor early and if your out and about you will at least have something with you. Its also a good idea to get in the habit of leaving your purse by the front door with your emergency bag when your home, so you or the paramedics can just pick them up on the way out (this is particularly good in the middle of the night).

Have an emergency contacts list (delivery suites, GP etc) in your purse. you never know when you might need a number and its back up in case you don’t have your phone with you, run out of batteries or need to get someone to call for you.

Make a list of people you want the hospital to call (like a next of kin list but bigger ie hubby, mum, dad, MIL,FIL, siblings, friends etc anyone whose close and can support you if you are brought to the hospital by yourself). Take it with you and keep it close if there is an emergency and you’re taken to the hospital.  The hospital staff will generally ask if there is anyone they can contact for you and rather than them wasting time looking for the information in your file….or asking you to look it up you can just give the list to them. This will save time and get someone there support to you much quicker. It also means that if they can’t get onto hubby for some reason they have a list of second bests’ who can be there and also keep trying hubby for you and hospital staff can concentrate on helping you. 

Have a GP you trust, can talk to on a regular basis and that will advocate for you…ie get you extra ultrasounds, see you at the drop of a hat and will be able to talk to the hospital if need be.  Its also a good idea to talk with your doctor before hand and organize a game plan if you do go into labor early or have bleeds ie if you go to his surgery and it is too late to make the hospital can he deliver there, have his number maybe in case of emergencies (including heavy bleeds). It’s a good idea if they seem confident and make you feel better about concerns you have (not dismiss them, or play them down though!!!).

Try to get a hospital that you trust (this could be a little hard to change and may be out of your hands in any case on game day ….paramedics try to get you to the closest available one),.

ADVOCATE for your self…this is not a normal pregnancy and despite their best efforts the hospital staff (or your GP) might not really understand your or your condition.  TELL them what you need and that it is important.  This is more easily done if it is your second pregnancy or if you have kept a diary (see below). BE CONFIDENT, DON”T LET THEM TELL YOU YOU DON”T KNOW ANYTHING.

Get to know your body and how it acts…this is important for advocating for yourself. A good way to do it is to take a diary of things that happen (ie you’ll be able to tell them why you think your inlabor even if it doesn’t look like you are)  this is particularly good for first pregnancies because you might not necessarily know who your body is going to react to the pregnancy let alone the condition.

Read up about the condition get to know the symptoms so you know what to look out for and how to deal with them (have a plan with GP and hospital).  Seek out forums and talk to others who have this condition…try to look for symptoms that you might get and find out how to deal with them but also try to find stories that give you hope rather than stress you out. 

Talk to your GP and hospital about the possibility of a cerclage (a cervical stitch) it could help prolong a premature birth. Most doctors won’t do anything further by way of intervention for a bicornuate , they might consider reconstructive surgery for a septated.

Take lots of vitamins and try to eat right. You may be told to rest with no exercise so its even more important. I was on bed rest and ate basically the same (maybe with a few extra sneaky cakes as thats what I craved) and put on 20+ Kgs in the 6 short months I was pregnant (ie had I continued to be pregnant to term it would have been a very unhealthy 30+ kgs heavier…very scary).

I was told to take fefol (over the counter folate and iron tablets) the iron helps with stopping anemia and the fefol helps to make the baby healthy as well and slowing or stopping any bleeds.

Get your kidneys checked as they form at the same time as the uterus and women with these conditions often have only one or only one working kidney.

I was also told by one specialist to get screened for cancer on a regular basis as some medical circles believe there is a link (not substantially proven but she didn't want me to take the risk).

but mainly don't panic! If you have this condition, don't give up hope, you can have a healthy baby!

I hope this helps somebody!! 

PS There are several types of mullerian duct abnormalities which are catergorised as:

 hypoplasia or agenesis - over development or underdevelopment of cells in uterine lining

unicornuate uterus -  where two parts don't fuse abd one side doesn't develop resulting in half a uterus with a small off shoot to one side

Didelpus - when the fusion basically doesn't happen at at resulting in two vaginas, two certix and two uteri (a fiberous tissue divides)

septated uterus - where the women has two uteri (a fiberous tissue divides)

bicornuate uterus - a heart shaped uterus which is not seperated by tissue

arcuate uterus - the lining of the uterus protrudes into the uterine cavity

DES drug related - anti-miscarriage drug given to women in the 60's which retarded the female feotus's uterine growth

There is a very good diagram at http://www.ajronline.org/content/vol189/3_Supplement/images/large/06_0821_01.jpeg which shows what each abnormality looks like and this web site is good for describing what each one is http://www.emedicine.com/radio/TOPIC738.HTM