Sydney-Mae Wiggins was born at 22.22 on Sunday 18th May 2008 at the Princess Royal Hospital in Haywards Heath. She has one older Brother, Taylor who was 7 when she was born.  I was six days over due and we were so ready to finally meet our little princess. I went into labour at home in bed on the Saturday night whilst watching the movie P.S. I love You, with my husband Ross. We had spent the day cleaning our new house we were due to exchange contracts on two weeks later so it was a very busy yet exciting time for The Wiggins Family! I finally went to the hospital at 18.30 on the Sunday. Having survived on Gas and Air alone (very good for me as I am an absolute wimp!!) and so far experiencing a text book labour I began to push. At this point the mood in the room changed as the Midwife delivering saw a large amount of Meconium (infant stools) and raised the alarm for the Paediatrician. Once Sydney-Mae was born she was rushed out of the room. We were obviously very upset and wanted to know why our baby had not been crying- was she OK? My Mum and Ross’ Mum were also present at the birth and were trying to convince us all was OK. After twenty minutes the Paediatrician brought Sydney-Mae back in and said that all was OK- we would just need to stay in for 48hrs Meconium Observations as procedure. She laid Sydney-Mae on my chest so we were able to do ‘skin to skin’. I remember seeing her little face for the very first time and being taken back at how beautiful she was and how much she looked like Taylor. It was a truly magic moment.

After an unsuccessful attempt at breast feeding Sydney-Mae I gave her a bottle and we were moved onto the maternity ward. Within minutes of being on the ward I said to Ross that I was concerned about Sydney-Mae- she was acting ‘strange’ but could not pin point what it was she was doing. I decided I was being paranoid- now I realise it was in fact ‘Mothers Intuition’!   It was 1AM by now so I initially put it down to me being tired and emotional. Ross then left and I became more concerned about Sydney-Mae so I asked the Midwife to get the Paediatrician to come and check her over. The Paediatrician gave her a clean bill of health and told me to sleep and then Sydney-Mae would. Sydney-Mae did not sleep for the entire night. She kept looking as though she would fall asleep and then her little eyes would ping open and she would let out a very feeble cry. By the following morning I was absolutely convinced she was unwell- her eyes were now beginning to worry me in the fact their movements did not seem normal. I continuously told the Midwives of my concerns and was told each time to relax and stop worrying! When Ross came to visit with Taylor and Great Granny the following morning Ross also saw what I had seen- he too could see that our little princess was not behaving normally.

Around lunchtime one of the Midwives (who had previously told me to calm down and stop worrying) said she wanted to get the Paediatrician to come and check Sydney-Mae over as she thought her eyes needed checking. The Paediatrician checked her over and said she thought all was fine and that it was muscular but to be on the safe side she would call the Consultant in Brighton. Twenty minutes later the consultant arrived and we were taken to a side room where he could assess Sydney-Mae. After what felt like a life time the Consultant said he thought she was suffering from Seizures and they needed to take her in to Special Care to run some tests. I remember feeling relieved as I knew she needed help- I knew that Special Care was exactly where she needed to be. They ran lots of tests and did a Lumbar Puncture. They gave her lots and lots of doses of Anti Epileptic drugs and they still could not stop her from having seizures. Eventually they said she needed to be transferred to The Trevor Mann Baby Unit in Brighton which is an Intensive Care Neonatal Unit. As they prepared her for the Blue Light Transfer in the Baby Emergency Ambulance the Bishop from the church I was raised in came and gave her a Blessing. We were then advised we would have to drive down separately as the ambulances were unable to carry passengers due to all the equipment. We were then given three photos of Sydney-Mae. As we were leaving the unit I asked the Doctor if Sydney-Mae was going to die- she answered with “you know you have a seriously unwell baby. Some do, yes”.

When we arrived at TMBU we went to see Sydney-Mae and it was a sight I was not prepared for- tubes everywhere, ventilated etc. A sight that will never leave me. She was having bigger and more obvious seizures. The following morning we were advised she had had a very rough night and she had fought for her life all night. They had finally managed to switch the seizures off and she was now very heavily sedated. The reason she was ventilated was because they had actually shut her brain down so therefore she would not be able to breathe for herself. We were then given the prognosis form the Consultant. They were investigating two options- either she had a Metabolic Illness or she had suffered a Lack of Oxygen. They were running hundreds of blood tests and doing a full screen of her little body. If it was indeed a Metabolic Illness this could mean it could be controlled by simply taking a tablet per day or on the flip side it could mean a very short life span and being very poorly. If she had suffered a Lack of Oxygen she could have 25% chance of passing away before day 7 of life, 25% chance of making a full recovery and 50% chance she will have brain damage that could be anywhere from mild to profound. We were absolutely devastated as you can imagine and to be honest it is still far too raw to even allow myself to go there.

When she was nine days old she had an MRI Scan and we were advised we would have to wait three weeks for the results. The same day she was assessed by a Speech and Language Therapist who advised it was now safe for me to start breast feeding her but it would take about six weeks before she was ready for the feeding tube to be removed from her nose. Well two days later the tube was removed as she was fully breast/bottle fed- what a little star! In the days following the scan the consultant was telling us that they would feel a lot happier if Sydney-Mae would begin to show signs that she was now coming out of the sedation. She was still totally paralysed and shut down. She was beginning to become very swollen from where she had no movement what so ever.  Ross, myself and Taylor would spend hours at her side chatting away to her and willing her to wake up. I would sing her songs I sang when I was young at church- totally not caring who could hear my ever so out of tune songs!! It was amazing as when I mentioned Taylor she would flutter her little eye lids and try to open her eyes. She also became unwell with Pneumonia which was quickly made better with medication.

She slowly began to have periods of time where she would be awake for about 5 minutes at a time. I was so excited the first time I could bath her and put her in her own clothes as this to me symbolised that she was getting better. When she was fifteen days old we were told she was able to go home. As we were getting ready to come home the Consultant came to see us and gave us the results of her MRI Scan. It had showed that Sydney-Mae did indeed have Brain Damage caused by a Lack of Oxygen before, during or directly after her birth- this is know as Hypoxic-Ischemic Encephalopathy. We were told this could result in Cerebral Palsy. We were also warned she was at risk of suffering from Brain Epilepsy. So off we went so stay with the In-Law’s (disaster with new house but that’s another story!!) and tried to absorb all we had been told.

We engaged with therapies such as Physiotherapy and Osteopathy and tried to do all we could to help our little girl. As anyone with a child with special needs knows there are lots of appointments to attend so life was very busy. When Sydney-Mae was ten weeks old I had just returned home from a very positive Osteopath appointment where we had been told that Sydney-Mae has already exceeded the expectation of the MRI Scan and I was on cloud nine. My mood was to be short lived as there was a message on the answer machine from the Consultant. I returned the call expecting it to be the results from an EEG Sydney-Mae had checking for Epilepsy. On returning the call I was informed that the final of the hundreds of blood test results had come back as Positive. It was for a very serious Metabolic condition called Nonketotic Hyperglycinemia. On researching the subject we found out about this condition and the long and short of it was that if she had it she would probably not make it past five months. Thankfully after four more Lumbar Punctures and an agonising two week wait the results came back as negative and it was an error. Another story to tell the Grandkids………….

When Sydney-Mae was eight months old she was formally diagnosed by her specialist as having ‘Evolving Dystonic Cerebral Palsy’. The prediction is that she will be mild to moderately affected. On receiving the diagnosis we almost felt relief- once you know what you are dealing with you can deal with it. It’s the not knowing that can drive you totally potty! We still don’t know what her future is- we wont know it until she gets there! People often ask us if she will walk and talk etc and all we can answer with is we pray with all our hearts she will and we will do everything in our power to provide her with the correct therapies and equipment and of course love, to help her reach the fullest of her potential. We do The Scotson technique with her at home on a daily basis http://www.scotsontechnique.com and have already seen some progress in her development. We also attend Physiotherapy and Cranial Osteopathy. We will be updating the Blog on a regular basis so you will be able to follow Sydney-Mae’s Progress and will also be updating the Fundraising Page with details on Fundraisers we will be holding and also on things that we have used the money for. To enable people to keep up to date with Sydney-Mae’s progress (and to prevent us from repeating ourselves continuously!) we have added a subscription tool onto the Blog Page. If you subscribe to the Blog you will get an email notifcation of when we enter a new Blog.

If you got to here well done- glad you are not asleep yet!!

Thanks for reading,

Aimée, Ross, Taylor and Sydney-Mae Wiggins