Uma Maheswari

Uma’s Story

Born October 13th, 2010

Myself Salini and my husband Ajay Kumar got married in Aug 2006.I became pregnant for the 1st time in April 2007. But it was a vascicular mole. 2nd pregnancy was in Dec 2007. That was a twin pregnancy. Scanning in the 2nd month revealed a retarded growth. In both the cases there were minor bleeding also. For the 3rd time we consulted an infertility specialist in the home town but that too was detected as a vascicular mole. It was in Oct 2009.All the three pregnancies were aborted in the 2nd month itself.

By the time we had conducted whatever tests doctors had suggested and nothing was wrong. I became pregnant in all these cases without adopting any medical aids such as IUI,IVF etc… Then we consulted another very famous infertility doctor nearby. This time
also I got conceived in the normal way. But in the 1st month itself there was some bleeding. Doctor was a bit worried on that. He said if I missed that one also he would conduct a laproscopy the next time. But I didn’t miss that one which was the 4th pregnancy in 4 years. Everything progressed well upto the 7th month. Scanning on the 29th week revealed that my baby has got one vein in the brain enlarged which is called Vein of Gallen Aneurysm.The size of the vein was 5.8*2.2cm. We told the matter to our cousin who is a paediatrician. He contacted several cardiologist and neurosurgeons in the country and gave me this site address.

Each enquiry acertained the fact that we had very less chance of getting our baby healthy or even alive. I kept on searching the site. I could never imagine God letting me lose my baby. I started believing the stories of Mia Stewart from UK and that of Kai Westvig from South Africa which were published in the site. It was said that they had survived this disease miraculously.

We came to know that surgery(embolisation) can be done only if our baby become at least 6 months old after birth. Another scanning on the 32nd week revealed that the vein had a size of 5.4*.2.2cm.. I made a statistic on the survival chances of my baby on studying the stories posted in the web. I found that 3 among the 12 babies detected with the disease prior to their birth are still surviving. I started to believe that my baby has 1/4 th survival chance.

I delivered my little one normally at 11.38am on 13th Oct 2010. She was a beautiful baby girl. Though she cried at the time of birth her breathe stopped soon and was rushed to the NICU. At that time the heart beat rate was much high. Doctor administered medicines to bring down the beat rate. Scanning of the head also was done. The terrible beating of the heart could clearly be seen. The pumping of blood through the blood vessel from heart to brain was also clearly visible through the neck. Her body seemed to throw itself up with each beating of the heart. The sight was unbearable. We visited the ICU many times a day. She never opened her eyes. As hours passed by things got worsened. We told the doctors to do what they felt as the best.

On 15 Oct 2010 by 6.30 in the evening my baby was weaned of the ventilation and she passed away at 8.45pm on the same day. She didn’t wait to get named or photographed. The following is what is said in the report of our child:

”This baby was born in our hospital at term with a birth weight of 2.8 kg. Antenatally baby was diagnosed to have ‘Vein of Gallen Malformation with cardiomegally.’

After birth baby needed resuscitation with IV intubation and Positive pressure ventilation and baby had evidence of cardiac failure. Baby subsequently was transfered to NICU and started on ventilatory support,Inotropes and Antibiotics. Chest X-ray showed Cardiomegaly. USG-brain showed a large 3.5*3 cm aneurismal dilation in central part of cerebrum with effacement of ventricles. Turbulent flow seen through it. USB-abdomen was normal. The bad prognosis was explained to the parents. There was nothing to offer medically or surgically to the baby’s problem.The baby was weaned off ventilation and she expired at 8.45 pm. On 15-10-10

Case of death: Congestive cardiac failure secondary to Vein of Gallen Malformation”

The stories in the website and its team of doctors were very much helpful to us at the time of our extreme agony. I will remember with gratitude all those service forever. I publish our story also with the hope that it may help someone in one way or the other. We wish the very best to anyone visiting the site.Be strong and fight till the end and let God take the final decision.

Thank you very much for everything,

Salini Ajaykumar

saliniajaykumar[at]gmail.com

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About vogadmin

Vein of Galen UK is a website dedicated to families and sufferers of Vein of Galen malformation all over the world. We provide information and support for families affected by this condition.
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