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Anna lived to be a little over 5 months old. It really seemed like an odd age to die from VOGM. Throughout all of the stories we read, people either lost their babies soon after birth or they were strong enough to wait for embolization at a later date. We didn't know until after she was born last July that Anna had anything wrong. I had a perfectly normal pregnancy and delivery and Anna seemed healthy after birth. When the pediatrician stopped by the hospital to meet her the next day, he heard the incredibly loud heart murmur that prompted an echocardiogram. This was followed by a cranial ultrasound, since the echo pointed to an abnormal amount of blood flow to the head. This is when the Vein of Galen Malformation diagnosis was made. | |
| She was transferred to the Children's hospital that day. She actually didn't show any symptoms prior to her first embolization at 1 week. They apparently just knew that she would start going down hill soon. She had a large clump of feeders and her entire vein after the malformation was the diameter of a quarter. Our problems really started after the first 2 procedures, when accidental punctures made by coils caused massive strokes. After 6 weeks we were able to take her home. They told us she had significant brain damage and did not know what she would be like. We were going to try to have her at home for as long as her heart could wait for more embolization - we thought this would be several months, but it was less than 2 weeks. She was just breathing so fast and turning blue even on oxygen. She was immediately intubated and when they did an echo and an MRI to prepare for further procedures, they said that her heart filled her entire chest--barely leaving room for her lungs, and half of her brain tissue had liquefied, due to the strokes and the aneurysm stealing oxygenated blood from other areas of the brain. They encouraged us not to proceed. We could tell that our little girl was still fighting, so we didn't give up on her. We were in the hospital for 6 weeks that time. She had 2 embolizations. One was quite successful, but the 2nd was complicated by a major bleed.
They told us that Anna would be deaf, blind, paralyzed, and never come off of the ventilator. They were right for a while, but eventually these functions amazingly came back to her. She went home this time, not even on oxygen! Although her care was somewhat complicated, we loved having her home. She had stopped eating by mouth, so she was continually tube fed, and pretty sedated to reduce seizures. She still had to take her meds every 2-4 hours around the clock. Anna started therapy and began smiling, holding herself up, trying to eat, and she was just so lovable and cuddly! It seemed like she was such a miracle baby (she was) and had overcome the VOG stuff. In December, Anna got very sick. It started as a common cold and became pneumonia. Her heart and immune system hadn't regained enough strength to fight an illness. We had been so careful to avoid germs! With her brain damage, she was not a candidate for a heart transplant, and she was too sick for surgery anyhow. It was so devastating, because we wanted her so much and readily accepted her as she was. We just wanted to love her and work with her to be the best she could be. Her little brain was able to do so much more than they said it would anyhow… Anna passed away at home while we were holding her on January 1st. There is no way to squeeze the love and memories we have into a story. Truly the value and power of a life can not be measured in days, months or years. To us she was quiet, patient, wise, beautiful Anna. Dad’s ‘Little Duck’ and Eva’s ‘Anna-Fofanna-Tunanna’. The devastation of her diagnosis just didn’t fit our daughter. Medical professionals tried from the beginning to prepare us for death to come quickly. They also encouraged us, after the initial bleeds, toward a route of no further intervention, as her neurological outcome was questionable. We are forever grateful that we did not heed this advice. We knew Anna was stronger than that. Had we not bought this precious time, we would have never seen her smiles and kicks, heard her gurgles, known her intimately, and fostered a relationship between Anna and her loving and helpful big sister, Eva. These are the memories that we hold most sacred and dear. We can still barely admit to ourselves that Anna is gone. We were hopeful for her life until the last moment. She struggled and fought those last days like no baby should ever have to. It really seemed that she still was not ready to let go, and like God hadn’t made up his mind about whether it was time to take her, either. We will never forget our Anna, and we are determined not to let anyone else. Her little life has already made a great impact on the lives of many; some that we may never know. We plan to do many great things in her name. We find peace in knowing that Anna Maria is in the care of angels, and we will see her again. - 1/30/2004 |
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