I decided to do this journal – mainly because I wanted to have something to look back at one day and remember what I have been through and because we tend to forget how we really felt about things when things occurred. Also because there are many things in it which you can all relate to, and some which my reactions to even surprise myself. Maybe my strength will help someone in a similar position.

Brief intro – I am 25yo a law student in my 2nd year and my bf, Mike is 22. After a short unfulfilling marriage, with my ex husband, we met and fell instantly in love. We weren’t trying to conceive but he was unable to wear condoms, and I was allergic to most manufactured hormones. I had tried every form of contraception going, even a coil – but had no luck. My bf works as an engineer on a cruise liner and was sailing around east North America and Canada September 2007 when I joined him. I had never felt so broody in my life and after a few days we talked about the inevitable – that I would probably get pregnant. We both agreed that it wasn’t the best time and we would rather wait, but if it happened, it would be welcome. We even chose a name – Thomas. Unbeknown to ourselves, I was already 2 days pregnant and it was indeed a boy!

In the beginning!
Within two weeks my breasts were so sore that I could not sleep on my front anymore. I was getting cramps in my tummy worse than any period pain I had ever had, by week three I felt constantly nauseous and had completely lost my appetite. I became very worried about my health and thought that something must be very very wrong – I was so worried about the flight home.

At the end of week three, I flew home to the UK. I went to the doctor as soon as I could. She did every single test she could apart from a pregnancy test, as she said it was way too early for me to be showing pregnancy symptoms. By then the pains were unbearable!! That night at midnight I googled the symptoms and the words “ectopic pregnancy” occurred over and over again, so I did a HPT which could not have been more positive!! The little plus sign showed before I had even finished doing it! I think I went into a state of shock and fear, as I immediately put the test down, went into my bedroom, got into bed and rewound the dvd I was watching to the point it was at before I went to the bathroom. Eventually it clocked and at this point I phoned my parents (well after midnight) and told them the news. They were over the moon but eventually grasped the potential seriousness of the situation and took me hospital as fast as they could, really really scared I was ectopic, but at the same time chatting away excitedly about being grandparents.

Me and my sister sat in A&E for 7 hours waiting to be seen by a doctor. During this time, despite my fear, we were both so excited at me being pregnant – we talked about everything from baby names to where he would go to school! My parents weren’t allowed to stay but couldn’t hide their pleasure at possibly being grandparents!

Eventually the doctor saw me, and looking at my notes and before she even asked why I was there, started lecturing me on contraception! “So I take it you are sexually active, do you use condoms? Ever thought of going on the pill…” etc, all really sarcastic. I didn’t understand and said “does it matter? I am pregnant?!?!” She turned to me and replied “oh, so you know then…”. I cut her off with “of course I know, that is why I have been sat here for 7 hours!”, then it occurred to me, she was talking to me like she was my mother so I pointed out I was 24 years old and well informed about contraception, at which point she blushed, apologised profusely and said she had thought I was underage! If it wasn’t such a serious situation, I would have rolled on the floor laughing!

Next thing I knew a nurse was sticking drips in my arms so badly that I fainted from the pain (and I am good with needles!) and I was being loaded into an ambulance to be taken to a Maternity hospital where they scanned me over and over again and put me on strict bedrest.

After a few days of observation, consultants were unable to find my pregnancy on a scan despite my hormone levels being much higher than they should have been when pregnant. The doctors decided to operate to remove the pregnancy – convinced it was growing outside my womb. I was rushed into theatre as soon as a space was found. I was utterly disappointed and scared. I wanted the baby from the moment I found I was pregnant. I was so upset and was crying and screaming as they injected me with morphine and anaesthetic and I fell unconscious. They made two incisions, one just above my pubic bone and one that ran from my belly button down a few inches.

When I came round, a nurse said “It is all ok, they couldn’t find it, you’re still pregnant!” and shoved a photograph of my ovaries taken from inside me, in my face. It was so pink and disgusting looking that I had to close my eyes to stop myself being sick! A woman should never be able to see her own ovaries! But it seemed the pain had been caused by a cyst.

The next day I was able to talk to Mike in America who was desperately worried as he knew I was in hospital, but not what for. No one had wanted to break the news to him. I told him “it is ok, I will be fine, but I am pregnant!” The line went dead as the connection got cut off and I had no idea whether he had heard me or not! A few hours later he managed to get through again and he had heard, and was in a state of shock for a while, but was over the moon!

I was kept in for a few more days for monitoring whilst I healed and then released and told to return in a week.

A week later, at 5 weeks, there he was, just a blob on the untrasound. But a blob in the right place!

Whose idea was it to call it “morning” sickness???

Many weeks went past in a blink of an eye. The nausea very quickly turned to morning sickness which lasted the whole day, everyday. I couldn’t keep food down and could hardly leave the house, nevertheless I kept myself occupied with uni work and sleeping. I was so tired I slept for most of every night and day.

I had my dating scan with my twin sister. It was such an amazing moment seeing him there on the screen, moving around so much! He was standing on his head and waving to us like he knew we were watching. He was so small but looked perfect. I had chosen not to have the usual checks for downs syndrome and but all his measurements were fine and normal – apart from his legs being a little on the long side, like his dad! He was perfect – my little miracle! The MW was so friendly and shared our excitement.

Mike was due home at Christmas and I was so happy to be pregnant and couldn’t wait to see his reaction to my new figure and hug him for the first time since finding out we were going to be parents.

We spent Christmas together with his parents, him celebrating, me puking and suffering from an infection in my surgery wounds which was proving persistent, with me throwing up most antibiotics, and UTIs. I thought I was going to turn into a cranberry, I drank so much of the stuff! My bump grew very very quickly and was really apparent! People always commented that I looked like I was having twins or looked a lot more pregnant than I actually was. We couldn’t have been prouder.

At 19 weeks my bf went back to sea and my morning sickness was looking up. I was sick much less now and over the last few weeks had started going back to uni and getting back on track with missed work. My 20 week scan was due the following week, and the week after I was due to go and spend a month with Mike on his ship in Mexico. Baby was starting to confirm that the fluttering I had felt for weeks really were him moving around. He wiggled around so much! Unfortunately though, this amazing life changing feeling was to be kept to myself as Mike couldn’t feel him yet.

The bad news…

The week after Mike went back to sea, I went to the hospital for my anomaly scan with my mum. There was a terrible wait and we went in over 40 minutes late. The sonographer told me to lay down and put the gel on my tummy and started scanning without so much as a “hi, my name is..”. The only thing she said was “is it right you didn’t have your nuchal fold scan?”.

She turned the screen away and didn’t say another word and took what felt like forever. Meanwhile me and my mum chatted excitedly about the baby and my plans and whether it would be a boy or a girl. Eventually the sonographer turned the screen around and said “This is your baby…and we have found an anomaly on his spine……looks like spinal bifida. I will get someone to come and talk to you, if you would just take a seat in the waiting room”.

I felt totally shocked. I went numb inside. I knew most problems you could have but had never really looked into spinal bifida. We had decided that we didn’t want to know if the baby had downs because we knew there was nothing we could do, and we would not be able to terminate, unless the baby was unviable. I knew this was bad…very very bad. I held myself together still feeling numb and asked whether it was a boy or a girl. The sonographer put the scanner back on me and pointed to the screen – “that..” she said, “looks definitely like a boy!”.

I turned to my mum and said “I told you so!!” A boy was what I had wanted and so had my bf. The sonographer asked if I was ok and showed me out of the room, looking quite confused at my reaction. I was aware that I had shoved the information to the back on my mind and didn’t look at all concerned at what she had said. We took out the picture and sat in the waiting room which was thankfully now empty. After a minute or two I broke down uncontrollably. I had never felt so deflated and devastated in my whole life. I had no idea what this meant and I didn’t want to lose my little boy. I had never expected anything to be wrong. I had been feeling him move for weeks now and assumed everything was ok. I don’t think I had ever felt like that before in my life. It truly was the worst news I had ever received in my life and all I could do was cry.

I was taken to a side room and a midwife came to see me and after offering me some tissues, a drink and a hug, she calmly sat down and explained it to me.

At around 28 days, the neural tube fuses and the spine forms around it like a zip, from top to bottom. “Spinal Bifida” meaning cleft spine is when a gap forms in the spine causing the neural tube to be bare and nerves to poke through the spine and become damaged. The height of the anomaly usually determines which nerves these are. Damaged nerves can affect any part of the body – generally the higher the defect the more serious the damage. The area affected in my baby was lower spine which meant his legs, bowels, bladder and sexual function would be affected. There were also indications that he was developing an associated brain condition called hydrocephalus which is caused by fluid build up on the brain. This meant that the baby could have a lowered IQ, poor co-ordination and require life saving surgery to release the pressure on his brain, which could in turn lead to infections such as meningitis. He may require further brain surgery and surgery to his legs, bowels etc further on in life.

I listened to her whilst quietly sobbing, taking this all in. All I could think of was how Mike was going to take the news stuck on a ship with no friends and family. All I wanted was to hold him. I felt like the world was ending… but with my knowledge of the spine I managed to figure that it might not be as bad as she was saying and started asking questions, like likelihoods etc. The worst case being that he be paralysed from the waist down, to have shunts inserted into his brain, and suffer from brain damage. She was unable to give me more information and could not be specific. She was only experienced in dealing with spinal bifida in unborn babies and so had no knowledge of what happened when they were actually born, but arranged an appointment for a further scan and a consultant and surgeon to explain more to me the following week. But before she left she reminded me of my option to terminate the pregnancy.

This came as a huge shock to me as I had not even considered it. There was a chance that there could be very little wrong. I bore it in mind until my next appointment when I would know more, but I don’t think I could ever have done it.

I drove home switching from numb to shock and my mum called my sister who came round straight away. She works with human bones so knows quite a bit about spinal bifida and managed to reassure me that as the defect was right at the bottom of the spine, the problems could be minimal – such as weak ankles, needing support later in life. I tried to hold onto this and waited for what felt like the longest weekend of my life until my next appointment.

When a weekend can feel like a lifetime

Mike finally got in touch that evening. I broke down on the phone to him but he was brilliant. He asked so many questions but remained so optimistic. He shared my view that as long as there was a chance our baby could lead a normal healthy life, we had to give him that chance. There was then no question in our minds about terminating the baby. We were strong people who were physically capable of looking after a disabled son, should the worse happen. We accepted it would not be easy, but he was already our little miracle no matter what happened.

Now I had never been a religious person – but I believe in fate. You get what you are dealt and then you deal with the situation. What will be will be. There are too many ifs and buts in life to try and dictate your path. He could be fine. He might be run over by a bus before he is five. He might be born with a disease etc. I knew what we might have to face and for that I considered myself lucky I could prepare. My mum even said to me “You are gonna ask yourself “why me”? and I know what any religious man would say, and I would have to agree – “because someone has to, and you are strong enough to cope””.

During the next few days, I slipped in and out of shock and cried whenever anyone mentioned him, but I slowly pulled myself together and eventually felt I could deal with anything. I was already so in love with my baby that I would do anything for him, and if that meant go through hell and back and spend the rest of my life looking after a seriously disabled son, then that wasn’t too much to ask. I had heard that maternal instinct can make a mum to be protective of her unborn baby, but I never expected it to kick in so strongly!

Mike’s mother called to check that the scan had gone ok and to be honest, I didn’t want to tell her. I felt it was somehow my fault and also that I didn’t have enough information to tell her. I thought she might panic and worry about her own son, who was dealing with this thousands of miles away on his own. I told her that they were not sure about something they had seen and that I had to go back the following week. In fact, my bf told her that evening and she and the rest of his family googled spinal bifida and what they came across was truly terrifying! They panicked and called me and I got the impression they didn’t share our views on keeping the baby. But then, I had been given factual information from a doctor, and they were faced with the worst of the worst on the internet.

My family on the other hand, are very scientific people with a wide range of experiences with health and medical issues. Together we looked further into spinal bifida and were able to work out that it indeed could mean anything for my baby, but that the signs that had been seen were in the best possible part of the spine. We read that the operation on his brain may not be required, and even if it was, it was a simple procedure. They were very supportive, stating their own opinions and generally finding that we did agree. We learnt a lot about each other that weekend and they made me so much stronger with their faith in me.

1 in 10,000 babies

The scan and consultant’s appointment finally arrived. I was lead into a bigger room where the midwife who I had spoken to the following week introduced me to my consultant – a very friendly looking woman and her technician. I laid down on the bed and to my surprise the consultant did not pull the screen away. She scanned the baby for an hour, pointing out everything along the way – “this is his heart, his legs…he is such a wiggler!” etc. I watched him kick, punch, wave, suck his thumb. He looked adorable and I felt so proud and privileged for being able to watch him for an hour. I was much more in love than I thought possible.

After the scan, she gave me loads of pictures of him, which were all so cute! Then she explained what she had seen. She had not seen anymore than the previous scan, but this is was a little re-assuring. She had seen a cyst on his sacrum (lower spine) which looked quite small, but was definitely there. She was unable to tell what type of cyst this was - it may or may not contain nerves, which in turn could be damaged. There was no way of knowing this until he is born.

She also saw his head was very very small and “lemon” shaped. This is another sign of spinal bifida and the associated hydrocephalus. The ventricles in his brain where spinal fluid collects were slightly enlarged, but within the normal range – so it was too soon to see if he did indeed have hydrocephalus. Again I would have to wait until he was born.

She explained all the complications that can occur and all the problems that couldn’t be ruled out. She explained that the information she was giving was an “umbrella approach”, that she was telling me everything there was to know, but that most cases were never that severe. She referred me to a surgeon who would be able to give me more information.

The appointment with the surgeon was a few days away and me and my mum met him in Neonatal intensive care unit which was an experience in itself. I felt strong and ready to take on the world with an open mind, but nothing can prepare you for seeing all the babies in boxes with wires, crying on their own. I instantly knew I would be spending a lot of time here and struggled to control my tears.

The surgeon was very professional but also slightly fatherly, which put me back at ease. His approach was entirely different from that of the midwife, instead of covering his back as the consultant had by covering all the possibilities, he narrowed things down for me a little. Confirming that, although it was not 100%, in most cases where the defect was so low in the spine, if there was nerve damage, it may affect his ankles, which might be weak and possibly need support or surgery when he starts to grow taller as a teenager. He might, have weak knees, and there was a slight chance he might need a wheelchair. But he made me feel like the chances are, he might just have weak ankles.

He explained that I should expect bladder and bowel and possibly sexual dysfunction and how these are dealt with, some can be dealt with by medication. Some with catheters, etc and some minor surgery. But in nearly all cases, these issues were treatable, at worst.

The scariest part for me was the risk of hydrocephalus – the thought of brain surgery was frightening, but he didn’t feel it was something that I need be concerned about.

He then explained that Tommy would be born vaginally, as normal as possible, will then be wrapped in clean film (to seal any wound he may be born with) and I would be able to spend half an hour with him, before he be whisked away to NICU where he would be taken into surgery to have the gap in his spine repaired. He described the operation as a simple one he had performed many times before and said that Tommy would take up to ten days to heal. During this time, he would have his head monitored for signs of fluid build up, and have his bladder and bowel control tested and treated if need be.

He reassured me so much and really narrowed down what I was to expect. He said that only one baby a year is born with spinal bifida in this hospital which I found utterly amazing! He then introduced me to the team of people who would look after Tommy when the time came. A list of upto 12 people! Physios, urologists, neurologists etc.

Finally, I mentioned I was due to fly to Los Angeles to spend a month with Mike in Mexico on board his ship and he recommended that I go still, to enable me to discuss everything with my bf and to help me get over the trauma I had been through, after all the stress I was going through was having an impact on little Tommy too! Never in my life had a needed a holiday and to see Mike so much!!

After informing my midwife of all the news, I was given a huge hug and letter enabling me to fly. I phoned Mike’s family and told them the news. Despite me trying my hardest to reassure them that there was a good chance that there would be no problems, or little problems and that most major problems could be dealt with, I still got the feeling that they didn’t entirely agree and were concerned for their son. However, Mike assured me it was just fear. I comforted his crying grandmother who had been the victim of a friend trying to offer her advice on her own experiences and set off for LA, to put it all behind me for the time being. There was absolutely nothing I could do until he was born. Until then I was determined to relax and do everything I could to protect and nurture the little one inside me – and that included eating loads! I had a lot of catching up to do!

Ariba Mexico!

I arrived in Los Angeles and boarded the ship the following day to receive the biggest warmest hug of my life from Mike. I almost cried I was so happy to see him! We had a wonderful month together, in between his dodgy working hours. I rested and ate like I was planning to run around the world. Mike would put his hand on my tummy and try to feel Tommy kicking whenever I started to feel him going mad in there. But he seemed to have a sedative effect whenever he touched my tummy – Tommy stopped! In fact, when I was trying to sleep at night and Tommy was keeping me awake, Mike would put his magic hands on my tummy and all three of us would go to sleep. It wasn’t until it was nearly time to leave when Mike eventually felt him kick and the look on his face was pure pride. I will never forget that moment

TMI warning!

After just a week of being on board ship with Mike, doing what couples do when they have been separated for weeks, Mike commented on how wet I was and when I checked I was absolutely soaked with what seemed like water all over my legs. I didn’t think much of it but later googled it. What I saw terrified me! It was entirely possible that we had broken my waters and I was at risk from infection and pre-term labour. I was around 20 weeks at the time and knew the baby stood no chance of survival if it was pre-term labour. I was off the coast of Mexico, headed back to Los Angeles and would be at sea for two days before I could see someone. There was a doctor on board, but I knew that if I told him, I would be such a large insurance risk to them that they would not let me back on again and I would have to go home having only spent a week with Mike and 3 weeks early. Stupidly, this was what worried me most. So I decided to rest up and see what happened.

Over the next week, I leaked a little constantly, but nothing serious – just dampness and it seemed to happen for 24 hours after I had sex, so I decided to lay off it for a bit and see if it stopped.

By week three, I had caught tonsillitis and had to go and see the ship’s doctor. I told him about the past few weeks and he was very concerned that I might go into pre-term labour. Again I was at sea for two days and unable to get off the ship, but when we did get to land, I was planned to leave. I was put on strict bed rest. I tried not to worry because there was nothing I could do and I enjoyed the last few days relaxing with Mike. Lots of hugs and snuggles whilst watching movies in bed.
It was an uneventful couple of days, thankfully and on my last day I got off the ship, said a tearful goodbye to Mike and headed to a motel in Los Angeles to get some sleep before my flight. I blubbed in the taxi the whole way. I managed to get a premium seat on the aeroplane and was able to lie back and sleep most of the way home. Eventually the plane landed and my parents picked me up and took me home. I felt awful and very sick due to tiredness, jet lag and tonsillitis and headed straight for bed as soon as I got home. I slept for what felt like days in my big empty lonely apartment, before I had an appointment with my midwife. I told her about the leaking and she told me to go to the labour ward at my local hospital asap, as she was worried about me getting an infection.

So off I went, with my sister in tow. We sat around and waited for 4 hours to be seen by a doctor who just did a very quick internal, took a swab and told me to go home and call back in a few days for the results. Typically, I hadn’t leaked that day, nor did I leak again after that, and the results were clear. It seemed me and Mike might have ruptured my waters which had healed up again on their own! PHEW!!!!

Little Tommy then did everything he could to put my mind at rest! He punched, kicked, wriggled, constantly and I couldn’t believe how strong he felt. I put my hand on my tummy and he pushed against it with his little foot. I often felt simultaneous kicks/punches in my hips and ribs, so he was either kickboxing or doing the splits! He did it day and night every day and seemed to have established a comfy position, upside down with his head down in my pelvis lying across my left side, kicking my right ribs and headbutting and punching my bladder.

It certainly was the most reassuring thing in the world to see his little feet trying to push their way out of my tummy and I couldn’t wait to hold his little feet in my hand and tickle them!

My next scan was at 29 weeks – on 17 April, where they would check his head growth and whether the fluid levels in his brain were getting better or worse. I was starting to feel tense and a little frightened, but everyone was around me, counting the days with me.

wow what a read, i have spoken to you on the message boards with regards to folic acid, my daughter was suspected to have spinal bifida that moment at a scan waiting for someone to come talk to you is like a life time. your are clearly an amazing person. i hope your parents and partner are so proud of you for handling this so well! i lost my daughter at 29 weeks shortly after spinal bifida was ruled out-she had a unexplained bleed on the brain- i had the same out look as you with regards termination i was happy to hold out and hope for the best.
its so good that your surgeon put your mind at rest.

good luck and im here for you if you need an ear :-)

x

Wow, what a journal.

You are indeed an amazingly positive woman. Your little one is lucky to have such a wonderful mother.

Good luck xx

i would like to say god bless and stay positive...

you truly are an inspiration to all, i have been moaning and feeling sorry for myself for reasons that dont even to compare to the trials and tribulations that you are or will be facing....I treasure this poem and send it with love...

hayley x

One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.

This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.

So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only been one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"

The Lord replied,
"The times when you have
seen only one set of footprints in the sand,
is when I carried you."
Mary Stevenson