My story........

I'm new to blogging. I've read a few in the past, but never actually created one myself. I've found, from my limited experience, that blogs can be very helpful to people out there. They offer comfort to those who feel alone. They can also be a great source of information.

I've decided to set up this blog to reach out to those parents who have just been given the devastating news that their precious unborn baby is suffering with a serious condition called Hydrops Fetalis. I'm hoping that this blog will evolve into something that can offer support and advice, both from myself and other's out there who have experienced, or are experiencing a similar situation to mine.

So to tell my story (I should warn you that this is going to be a very long post)......................

First I should begin by telling you that I have a beautiful boy who is 2 1/2 years old. He is a complete monkey - a typical boy! Into everything, never sits still and NEVER stops talking. He loves Dinosaurs and Super Why. He also loves to read and draw. He is fabulous in every way. He is my first child.

I found out I was pregnant with my 2nd child (although I have had 3 previous miscarriages) in November 2007. Everything progressed smoothly. My first scan at 7 weeks showed a heartbeat, and my next scan at 12 weeks showed that everything was fine.

Then, at 19 weeks I woke up to find a small amount of spotting upon visiting the bathroom. I totally freaked! I rang the hospital straight away and they told me to come in so they could take a look.

When I arrived at the hospital the midwife listened to the baby's heartbeat - perfectly normal, and strong. But for the fact that my husband kicked up a fuss, they would have sent me home without having a scan first! So to the scan room........

I'm lying there, relived that there was a heartbeat, and assuming that the scan was a formality. I then start to become worried as the sonographer is taking longer and longer with the scan. She eventually turns to me and says that she has found fluid in my baby's chest cavity (both sides), and that she would need to refer me to a consultant. She also tells me that my baby is going to be a girl.

Before I know it I'm being seen by a consultant. She has a look at the baby and tells me that she has bilateral pleural effusions (fluid in both sides of her chest). She informs me that this condition is potentially very serious and that they would need to send me to a very prominent children's Hospital for a detailed scan of my baby's heart. They give me an appointment for 2 days later.

2 days later and we are at our appointment. The doctors are very friendly and very efficient. Silence in the room as the scan is carried out. My husband can see everything, and I, as usual, cannot see a thing! The scan is finished and the doctor turns to inform me that my baby's heart is fine, and that everything appears to be functioning as it should. He does not believe the effusions are being caused by the heart. He does note a significant mediastinal shift to the right, which has been caused by the fluid.

So, back to our hospital with the results 5 days later. We are scanned again. My baby's condition is deteriorating so that now she has fluid in her abdomen (ascities) and moderate swelling in the skin around her head. I'm totally devastated, but determined to carry on. They then take blood samples from me to check for infections etc. The consultant - a very negative man who is hell bent on my 'terminating the pregnancy', informs me that if the hydrops is not caused by an infection then it is most likely genetic in nature and the prognosis is dire. He says that we should wait for the blood test results and then take it from there.

1 week later and we're back at the hospital again. The blood test results are in - negative. Things go from bad to worse as my daughter's condition worsens, along with her prognosis. We ask what the next course of action is. Again we are offered the option of 'termination' - not a chance in hell!! We are then told that the only treatment that is available is to insert shunts (drains) in to the baby's chest through my abdomen. There is a risk of miscarriage with the procedure, but this is our only option. We are given an appointment for 1 week later at another hospital.

Our appointment arrives and in we go for yet another scan. The consultant takes a look at the baby and informs us that there is an 20% chance that our daughter will survive with the shunts, and 100% chance that she will die if we don't have them. No prizes for guessing what decision we made!!

Ahead with the procedure....A large sharp instrument (which I can only describe as something that looks a bit like a letter opener) is inserted into my abdomen under local anaesthetic and through to my uterus. It is then pushed through into my daughter's chest before 2 drains are inserted (one on each side of her chest). The procedure takes about 5-10 minutes. Done. We are then sent home and told to return to our local hospital in 2 weeks time for review.

At review 2 weeks later it is found that my daughter's condition has deteriorated and that, in the consultant's opinion, the shunts have not worked. That's it as far as he is concerned. Not for me though! After researching on the net I stumble across a doctor in Denmark who has experience in this field. I contact her for advice. She tells me to get in contact with a doctor in London. He is the world's leading expert in fetal medicine, so if anyone can help, he can.........

So we are refered and given an appointment for a few days later.

We attend our appointment and again are scanned, this time by about 4 different people. They are all amazed at the amount of swelling my daughter has and are surprised that I am not suffering with any swelling or polyhydramnios. They refer me to the Professor. After waiting for hours, we get seen. He takes a good look at my baby, then turns to me and says: "Do you want to do everything no matter what?" We reply yes. He then says that he will re-do the shunts.

So the procedure is carried out again. This time, for some reason, it is different this time, and it makes me feel quite ill - to the point wherre I actually throw up!

We are sent home and asked to return in one week for review.

Our next appointment arrives. We wait anxiously for ages before being called in. I lie down on the bed and get ready for the scan - I'm now a total expert at this! The doctor starts to scan me. He then turns around and says "it's a miracle!". The fluid had almost completely gone, in just one week! There was a minute amount of swelling around my daughter's scalp, but that's all. This news greatly improved my daughter's prognosis, and we were informed that the cause of the hydrops was most likely mechanical in nature (although genetic syndromes could not be completely ruled out). We were asked to return in 2 weeks time for review.

2 weeks later and we are back at the hospital - bad news. It appears that the fluid is reaccumulating. The doctor believes that the shunts may be blocked - AGAIN! Not only this, but the blood flow in the umbilical cord is intermittent and they are worried about my baby's size. They inform me that I will need to return in 1 weeks time for review. If the fluid has gotten worse, then shunts will need to be done again. If the blood flow has stopped, the baby will need to be delivered.....

Now to the worst day/night of my life.................

On a number of occasions since this journey began I went to my local hospital because I was worried that my daughter wasn't moving. Everytime she was fine.

The morning of my last appointment I again felt as though my baby had not been moving, so I went to my hospital to get checked out. They listened to her heart then scanned me and said she was fine. Her heart was strong and she was moving. I'm told to keep my appointment for later that day.

So to our appointment. I'm scanned again, and bad news is delivered. The swelling is getting worse and the flow in the cord has stopped. Also, our daughter has stopped growing. We are told that the shunts will need to be done again, and that delivery is not an option. So we are prepared for the procedure.

Prof takes a look at my daughter and is concerned about her heart rate. She apparently has a bradycardic episode which sponateously recovers, so they are happy to continue. The first shunt goes in fine - no problems. The seconed shunt goes in, and an air of uncertainty develops. My daughter's heart rate drops significantly. I'm told that this is common and should resolve. I'm sent off for monitoring. The midwife attaches the CTG monitor to me, but has difficulty in locating a heartbeat. She eventually finds one - 55bpm. She takes me back to the scan room to be re-scanned. The professor returns and announces that the baby requires emergency resuscitation. Blood will need to be taken from me and transfused directly into my daughter......they begin. A needle is passed through me into my baby's cord and blood is given with no luck. The needle is then placed directly into my daughter's heart. Her heart rate picks up momentarily, but then drops. The procedure is stopped. No blood is flowing through the cord or to the brain. My daughter is dying and there is nothing that can be done. We watch on the screen as her heart contracts slowly, the monitor is then turned off. Amidst all of this I, my husband and in fact the whole room became covered in blood - I'm not sure how. The room went from about 30 people (mostly spectators) to just me, my husband, the midwife and a doctor.

We are told that labour will need to be induced the next day. We go and see our consultant at the local hospital. She gives me a tablet and tells me to return the following day. So we return to the hospital. I'm given my first dose of Prostin gel. 6 hours later- nothing. Another dose is administered and I'm allowed home to tuck my son into bed. The contractions start. By the time I get back to the hospital they are getting bad. Before I know it, I'm 6-7cm dilated. I'm given an epidural, thank God!! My daughter was born still at 04:24am on 09 May 2008. She weighed 2lb 5 1/2 oz, and she was beautiful. We held her for ages before she had to go. Then we go home............

So here I am now, 6 months later, writing this blog. It's been difficult getting here, but I have. I've had many down's and not many up's, but that's how it goes I suppose. My son has definitely been my saving grace through all of this. Without him I don't know what would have happened.

Now to my good news - I'm pregnant. I'm 6 weeks gone and due on 29 June 2009. I'm a bag of nerves. I'm desperately afraid I'm going to have another miscarriage, or worse still, another sick baby. But no matter what, I will see this pregnancy through to the end. I've been told that there is a 20% chance that I could have another hydropic baby, please God let this baby be in the 80% that won't...........