Born June 7th, 2007
Our first daughter (Niamh) was born by emergency caesarean section weighing in at 7lbs13oz, healthy and with no problems. Ella-Grace was born at 39 weeks, also by c-section, weighing 7lb2oz. Again all was deemed healthy and normal.
Ella-Grace seemed a normal healthy baby until we started to notice that she was getting a ‘veiny’ head which we think started between 3-6 months of age. To begin with we thought it was just the way she was but as they started to progress, we visited the doctor who did not feel there was anything to worry about. The veins got progressively worse, appearing all over her head, moving down her forehead, across the bridge of her nose and under both eye sockets. During this period Ella-Grace was doing well and hitting all her milestones but we returned to the doctor a few times more as we just felt that something wasn’t right and finally a doctor agreed that this needed to be investigated.
Ella-Grace was referred immediately to our local hospital where the paediatricians advised that her head was not growing in proportion to the rest of her body and that an MRI was required to investigate further. They also took clinical photos of her head. Both doctors who saw her had never seen anything like it before. They measured both mine and my husband’s head and, as we both had larger heads than average, that issue was less of a concern for them at that time. Clinically she appeared to be normal so this was somewhat of a mystery to the doctors.
Ella-Grace was sedated for the MRI and luckily we managed to get through the scan without her stirring or becoming distressed. The scan was conducted on the Friday and the images were dispatched to various hospitals for diagnosis. By the Monday they contacted us and she was diagnosed as having Vein of Galen Malformation with bilateral jugular bulb occlusion. To preserve her own life Ella-Grace’s body had thrombosed both her jugular veins and created an alternative superficial venous system. She has reversed blood flow over the top of her head which drains via lots of small veins created in her face, eyes and chin back to her heart. This is an added serious complication.
We immediately started to research the condition and made contact with other families affected by VGM. We were advised that the NHS funded the treatment in Paris and that Prof Lasjaunias had pioneered this treatment with Dr Alex Berenstein in New York. The two had worked closely together over the years and their experience spanned some 20 years with high success rates quoted. They were the world leaders in the treatment of the condition and the decision was made that Ella-Grace should
go to Paris under the experienced hands of Prof Lasjaunias, however, we were then advised that the funding had been withdrawn for new VGM cases because two units had been set up some months earlier in this country.
We quickly met with Dr Brew at Great Ormond Street, we knew that we were in a race against time, Ella-Grace was a ticking time bomb, but with the knowledge that this is a highly skilled and dangerous procedure, the comparison with experience and success rates, we were not able to change our decision just because Great Ormand Street was funded by the NHS. Our daughter deserved to have the best possible chance of surviving and beating this very rare condition by seeing one of the most experienced surgeons in the world.
Each child who suffers from a VGAM requires individual management. As Ella-Grace’s parents we owed it to her to look at all options and make a decision on, what we believe, is going to give her the best chance of surviving treatment and reducing her aneurysm allowing her, hopefully, to lead as normal a life as possible. This is a personal choice and one that no parent wants to have to make but we made the decision to go with experience in the knowledge that we will have done our very best for Ella-Grace based on the information we were given at the time. It has not been an easy decision and it is fraught with ongoing anxiety both for the health of Ella-Grace and how to fund the treatment.
Ella-Grace underwent her first embolization on June 26th 2008, in Paris, and came through safely. She went on to have her second, third and fourth successful embolizations on November 12th 2008, 11th April 2009 and 7th December 2009 in New York under Dr Berenstein, following the tragic death of Prof Lasjaunias days after her first treatment. Ella-Grace faces more procedures and is scheduled for her fifth operation on March 3rd 2010.
Ella-Grace was extremely poorly leading up to her operation in December 2009. She suffered seizures and debilitating headaches. We were not prepared for just how far her health had deteriorated and how serious her condition had become. Dr. Berenstein found her to be in serious venous hypertension, with her good drainage being almost completely compromised. With both these issues being taken into consideration it was a very dark day waiting for her to come through a very risky surgery. The situation was most definitely the worst since we found out about her condition. Thankfully she came through the procedure safely and Dr Berenstein has achieved a good balance between her blood flow and drainage in the brain. We have been told that we are by no means out of the woods and treatment will be very aggressive going forward. We can only liken it to a game of chess, the surgeon makes a move and you have to wait to see how the body reacts. It is all about getting the balance right. Following each procedure we have noticed a significant improvement in her development.
Ella-Grace is a little fighter and surprisingly made a speedy recovery. On returning home, I am happy to report that we have had a happy and healthy family Christmas. No headaches, sickness or seizures. It has been a joy to watch both our beautiful daughters playing and smiling and to all be together safe and well. This was made possible by all the wonderful, amazing support from the public, family and friends who have taken Ella-Grace into their hearts. No words can thank them enough.
We are now organising her fifth operation to take place on March 3rd 2010. Ella-Grace is stable at the moment and is now medicated daily with aspirin to thin her blood and she is also due to start taking anti-seizure medication. She is at risk of haemorrhage being on aspirin, but the risk of her body shutting down more of her good drainage is a far greater risk, so the aspirin is essential.
We know we have a long road ahead of us but take comfort in the knowledge that we have an amazing family and friends around us and with the support from the public we know we are not alone.
Our beautiful daughter will be celebrating her third birthday on 7th June. She has developed normally in all aspects. We hope this continues.
If you wish to keep updated with her progress please visit our website www.lifeforellagracefund.co.uk