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Experiences


When I found out that I was six weeks pregnant I thought that everything was going to be fine and that I was going to have a normal health pregnancy, I was mistaken. When Simon (my partner), and I arrived at our local hospital for the first routine scan at 13 weeks we were both feeling very excited and looking forward to seeing the first glimpse of our little baby. The lady started to scan me and it was lovely seeing and watching the little arms and legs moving around quite happily, then she seemed to concentrate on the baby's tummy, the intensity of the way she was scanning its tummy made me feel uneasy, she then explained to us that she thought the baby had a problem as there was a lump on its tummy which needed to be looked at by a doctor in the hospitals anti-natal clinic.

Both Simon and I felt very apprehensive about what was happening. The doctor looked at the scan picture and explained to us that it looked like the baby had a hernia on its tummy, he thought that the baby needed a detailed scan to confirm his diagnosis, so he made an appointment for me to go to the Birmingham Women's Hospital. Simon and I and both our Mums went to the hospital were I was scanned again. We were told that our baby had a large Exomphalos hernia. We were told that this could either be a chance occurrence or because of a chromosome related problem.
The newly arrived Daniel

I was offered a C.V.S test where they would take cells from the placenta and check for any abnormalities in the chromosomes but I would have to wait a further two days for the results. We both decided we wanted to have the test done. We both found it hard to accept that this could be happening to us. As we drove home I kept asking myself what have I done to make my baby so ill any WHY me.

When we arrived home we were still not able to take in what we had been told, knowing that only few hours ago we were so excited at seeing our little baby for the first time. My mum explained to the family to the best of her abilities, what was wrong with the baby, but due to lack of information about the condition, the only information that we had was what the hospital had told us and what we had seen on a TV hospital program a few years ago.

Later that evening Simon and I went to bed still feeling very upset and in shock. We started to discuss the baby's problem and we both came to the conclusion that after seeing his little arms and legs moving quite happily and seeing his little heart beating we knew we had to give him a chance of life.

On the day of my second scan the baby had moved and was lying on the part of the placenta where the test was to carried out so the test had to be abandoned. We were then offered an amniocentesis test which meant that we had to wait a further 4 weeks because this test cannot be carried out until I was 17 weeks pregnant.

When we came out of the hospital I still felt very anxious and upset as I still didn't know what the outcome was going to be. The following day I phoned the support group GEEPS where I spoke to a very nice lady who's son was born with the same problem as our baby, she was very helpful and was able to answer most of my questions and eased some of my worry. When I came off the phone to her I felt more confident that everything was going to be fine.
 
     
Daniel and his bump
    

It was coming up to our summer holiday so we all decided to go away as planned and try to put everything behind us which was not an easy thing to do. Four days after returning from our holiday we went back to Birmingham Womens Hospital for an Amniocentesis test., this was to check for Downs Syndrome. One was a mild form where life expectancy is quite good after the operation or there was a more serious form called Edwards Syndrome.

During the scan we also found out that the baby's hernia was larger than expected and also it was thought to contain the baby's bladder and kidneys. After the test I had to rest for 4 days as the Amniocentesis carries a 1% chance of miscarriage. We were told that they could do a quick chromosome count which both Simon and I agreed to, this would give us a result in two days while we were waiting for the Amnio test results. We were overjoyed when we got the results that the test was negative and there were no abnormal cells present. At least now we knew the baby's problem was operable.

I phoned Simon and told him that we were expecting a little boy and we both decided on the name Daniel-James. A few weeks later we were back at the hospital for another appointment with the professor and the heart specialist to check his heart was working correctly. Unfortunately the heart specialist couldn't make this appointment but the professor did a detailed scan to find that the heart had slightly twisted on its axis. This was normal for his condition as there was no internal organs inside to keep the heart in the right place but other than that the heart was looking very strong which was a good sign.

Two weeks later we went back to the hospital to see the heart specialist, just to confirm that what the professor had said was correct. The specialist said that when Daniel-James was born he would do an ultra-sound scan on his heart to check for any small holes which can't be detected on the scan at the moment. We have been back and forth to the hospital for Anti-Natal and routine scans to make sure that the blood supply is going to the umbilical cord. Everything has been fine and Daniel-James is growing according to his due date.

We made an appointment to see the surgeon who would be treating Daniel-James when he is born. He explained to us that until Daniel is born he does not know which procedure he will be carry out as each baby with this type of hernia is different.

He explained that there are different methods of treatment for this condition. One of the ways could be to operate to put the organs back into the body but because Daniel's hernia is higher up, he thinks that there is a possibility of causing Daniel breathing problems. As his organs are put back inside the stomach cavity, his lungs are pushed back into the correct position which could restrict his lung function.

Another method is put what is know as a compression bandage over the Exomphalos/wound. Over time the internal organs would slowly go back into his body, this would then be followed up with an operation to close the wound. If there is not enough skin to strecht over the wound he would take a skin graft from his thigh or bottom or use a gortex mesh to cover the wound to stop infection. He he then told us that the procedure could take anything up to 6 months before Daniel would be discharged from the children's Hospita, but treatment could continue for quite a few years as there is a tidy up operation to deal with the scar. We came out of the hospital feeling very positive knowing that there are many different options that could be followed to help Daniel.

The next anti-natal appointment I had, I saw a poster on the wall from Carlton Television asking for any expectant mothers who were expecting babys with problems to get in touch. The hospital contacted Susan Jones for further information. I phoned Susan when I got home and explained to her about Daniel's condition, she was very interested and we arranged a meeting so I could show her the scan pictures and explain in more detail.

Susan and I met up and she decided that it would be worth following Daniel's "story". We were pleased with this as we felt it would be very helpful to raise awareness of his condition. We continued go the hospital for check-ups to make sure that Daniel was growing and to check on his hernia.

On Wednesday 6th February 2002 I was admitted in the Birmingham Womens Hospital to start preparations for the section the next day. I was starting to feel very nervous that in less than 24 hours time I would see my son for the first time, a moment that I had waited for, for 9 months. I was absolutely terrified as I didn't now what he would look like with all of his insides on the outside but I was so excited I couldn't sleep all night. The morning came and Simon and our families arrived along with Susan and the film crew.

Tthe nurse came and said it's time now Sally-Anne, I was scared as I knew getting Daniel out safely was crucial. Up to this moment I had hid many of my feelings about today, how scared I was, what would be the outcome, and most importantly would my son survive this. As we were on our way to the operating theatre I said to the nurse and Susan I want to tell my mom it's time. I walked into the cafe saw my mum and said "it's time", I have never ever cried so much, it was 9 months of tension flooding out of the both of us. I will never forget those precious words my mum said to me and I will never be able to thank her enough for giving me the strength to cope with the rest of the day.

I went into the theatre and the doctors preformed the spinal so I could be awake when my son was born. After the theatre was set up Simon came in and I started to laugh but deep down I knew that he was another big part of my strength, he kept me laughing through those bad time.

When Daniel was born it took him about a minute to cry and then I heard the sound that I had waited so long for, Daniel crying, I knew then that he was alive. They took Daniel down to neo-natal, and as they brought him past I caught my first glimpse of him and i could see his tiny little face and lots of black hair. I was so proud to see him breathing by himself and knew that he really was my little soldier.

Soon afterwards Daniel was ready to be transferred to the Childrens Hospital so a nurse took me down to see my son. When I saw him, all I could see was my little boy lying there, I held his little hand and as much as I wanted to take him out of the incubator and love him I couldn't . The doctor said after 10 minutes let's go and they ran with my little baby, it felt like he was just taken away but at lest 10 minutes was better than nothing at all. I knew this had to happen but you can never be prepared to be seperated from your first child within a matter of hours.

The day after Daniel was born a vist had been organised with the Womens Hospital for me to go and see Daniel and spend a few hours with him. I was so excited I got out of bed, got ready and waited . When I arrived they took me straight to Daniel, and I felt so proud to see my little Daniel fighting. The nurse asked if I wanted to hold him, I jumped at the chance, my first cuddle, I was so proud I just sat there and loved him, and kept telling him how much I loved him and how proud I was of him

Sunday came and I don't think I have ever packed my clothes so quickly. Nothing was going to stop me from being with my son. Later that everning Daniel had a setback with his treatment. The doctor decided to use a pressure bandage to try and slowly compress his insides back in. This had been in progress since his birth and progress had been made, but slowly. They tried putting the bandage on tighter in the morning and by early evening his heart beat and oxygen supply became very high which could have caused a cardiac arrest, so they decided to ease the pressure. This was very difficult for me because I had never seen him like this before.

Daniels operation lasted about three hours. It was very successful and the surgeon was able to get everything back inside and close the skin. Simon and I went to I.T.U. He was was sedated but alive and well, It was so lovely to see him lying there, nothing on the outside, he looked like a normal little boy.

It took Daniel six days to be weaned off the ventilator. Near the end of this time he began to breath by himself. Unfortunately the skin covering his wound broke down and revealed the gortex patch. After Daniel came of I.T.U he made good progress and within a week he was having a small amounts of milk and a contineuos feed during the night through a NGT tube. After 2 weeks we could take him out of the hospital and go for a walk around Birmingham with him in his pram. This is when we realy knew he was out of danger.

Daniel was in hospital for a total of five weeks. It was brilliant on the day we came home. Daniel came out of hospital still on his continuous feed so the last week before we left I had to learn to pass the tube up this nose and to use the pump. He also had to have a district nurse visit him at home every other day to change the dressing on his tummy as well as going to the hospital once a week for his doctor to check that everything was healing OK. It was hard saying goodbye to all the staff at the hospital as we had built a a good relationship with them.

When we got home it was so nice to be able to have a night togethrt, just Simon and I and Daniel, we had finally got back to the real world. We had hospital visits every week and at one of these his doctor suggested that the gortex patch could be removed .

Daniel's tummy has now completely healed and he has only one more operation to have and that is when he is 6 years old to repair the hernia . He is doing everything like any normal four and a half month old baby. He is smiling, laughing, and I am now introducing mixed feeding to him. I know that I would never wish this upon my worst enemy but we have all come through it and are stronger for it. Daniel will now be able to grow up like a normal little boy and we will always cherish every moment with him but nothing will ever take away the memories of those first five weeks.