Anna Webb
01-25-2008, 04:29 AM
Hello all,
Lily's story is possibly a little different from many of the stories you will read on this site, though also with a positive outcome.
Lily was born with no fontenelle, which appeared a few days after birth. This was never followed up on as my midwife did not see it as necessary and I naively believed her. I had never heard of cranio and simply thought that her narrow, long head shape was a part of her. I do remember thinking that it was strange that she was squashed that way after such a quick birth, but thought no more of it.
At 18 months we found a ridge along the top of her skull. This was then noted by a G.P and we were put on a 3 month waiting list to see a paediatrician, let alone a neurosurgeon. I was terrified and angry at the casual attitude I received. I didnt accept this wait and made it my mission in life to have her diagnosed quickly. I prayed that God would help me and he did.... I remember my little boy 3 at the time saying mum I need to have a sleep on the couch (at 3 in the afternoon). He stopped having day sleeps at 18 months, but on this day he wanted a sleep (he has not done this since!!!! So, as my babies slept for 3 hours I got on cranio kids and searched the world for information. I rang every hospital in New Zealand I could. I rang 018 (which is a number you call if you want to find a phone number) and asked for Wellington Hospital. I later learned that she accidently gave me the wrong number, she actually gave me the number of a private hospital where a cranial surgeon worked. His secretary gave me his email address and I wrote to him and asked for help. I had an incredibly strong feeling that I was going to be heard.... He emailed me back from ChristChurch (on the other Island in New Zealand) (this is friday night) and said, I think i need to see Lily, I will be in Wellington (North Island, where we live) on Monday morning - bring her in at 9. I just dropped to my knees. He later told me he noticed my spam email because his daughters name was also Lily. This was his last appointment for 2006. He took one look at her and said, she needs surgery and the sooner the better - no need for a ct scan, we need to go ahead.
Three weeks later, my son got a major, major dose of the chicken pox.... (we dont vaccinate for it routinely here.) Miraculously, Lily got one chicken pox on her tummy and her surgery took place 2 weeks later on the neurosurgeons first day back from annual leave.
Following the surgery we were told her little brain was very squashed. I have a very strong gut instinct and in my heart I know that Lily would not have been ok without the surgery. It was all a bit of a whirlwind and took its toll on me emotionally for a good few months but watching my girl bounce back was just amazing - she coped so much better than her mum and dad !!!!!!!
Lily is now 2 and a half and such a delight. I am so grateful for her and when she packs a wobbler or picks all my unripe tomatoes or 'helps' by emptying her potty into the toilet for me eeeeek, I remind myself of just how deeply I yearned for her to be ok at the time of her surgery.
Anna:camp
Lily's story is possibly a little different from many of the stories you will read on this site, though also with a positive outcome.
Lily was born with no fontenelle, which appeared a few days after birth. This was never followed up on as my midwife did not see it as necessary and I naively believed her. I had never heard of cranio and simply thought that her narrow, long head shape was a part of her. I do remember thinking that it was strange that she was squashed that way after such a quick birth, but thought no more of it.
At 18 months we found a ridge along the top of her skull. This was then noted by a G.P and we were put on a 3 month waiting list to see a paediatrician, let alone a neurosurgeon. I was terrified and angry at the casual attitude I received. I didnt accept this wait and made it my mission in life to have her diagnosed quickly. I prayed that God would help me and he did.... I remember my little boy 3 at the time saying mum I need to have a sleep on the couch (at 3 in the afternoon). He stopped having day sleeps at 18 months, but on this day he wanted a sleep (he has not done this since!!!! So, as my babies slept for 3 hours I got on cranio kids and searched the world for information. I rang every hospital in New Zealand I could. I rang 018 (which is a number you call if you want to find a phone number) and asked for Wellington Hospital. I later learned that she accidently gave me the wrong number, she actually gave me the number of a private hospital where a cranial surgeon worked. His secretary gave me his email address and I wrote to him and asked for help. I had an incredibly strong feeling that I was going to be heard.... He emailed me back from ChristChurch (on the other Island in New Zealand) (this is friday night) and said, I think i need to see Lily, I will be in Wellington (North Island, where we live) on Monday morning - bring her in at 9. I just dropped to my knees. He later told me he noticed my spam email because his daughters name was also Lily. This was his last appointment for 2006. He took one look at her and said, she needs surgery and the sooner the better - no need for a ct scan, we need to go ahead.
Three weeks later, my son got a major, major dose of the chicken pox.... (we dont vaccinate for it routinely here.) Miraculously, Lily got one chicken pox on her tummy and her surgery took place 2 weeks later on the neurosurgeons first day back from annual leave.
Following the surgery we were told her little brain was very squashed. I have a very strong gut instinct and in my heart I know that Lily would not have been ok without the surgery. It was all a bit of a whirlwind and took its toll on me emotionally for a good few months but watching my girl bounce back was just amazing - she coped so much better than her mum and dad !!!!!!!
Lily is now 2 and a half and such a delight. I am so grateful for her and when she packs a wobbler or picks all my unripe tomatoes or 'helps' by emptying her potty into the toilet for me eeeeek, I remind myself of just how deeply I yearned for her to be ok at the time of her surgery.
Anna:camp