Our second appointment came for Tuesday 1st November to attend a drug trial at Birmingham Children's Hospital (BCH) and after that a quick visit to the eye infirmary to check eye sight and possible eye defects that might come from the Hemangioma.
The day started off as before, out of the house at 7am then on the tram and into Birmingham for a 9am appointment. Before being admitted we were given an opportunity to ask questions regarding the procedure and all the potential problems and successes associated with it. Now if anyone knows me I am thorough and I am always keen to get all the facts before making a decision so in my little black and pink Oxford notebook I had about 35 questions in total. These varied from will it go completely to will this affect her bowel movements (I needed to be sure just in case it turns it radioactive green and I start to panic). I also asked (don't know why) "Will the drugs change my baby's personality?" Reply from the Doctor: "I wouldn't have thought so but it is a trial drug", I was not ready for that............ In the UK the propranolol trials had only been going for a period of 1 year with only 43 cases (my little angel would be case 44).
It is still an experimental method of treating Strawberry Birthmarks or Hemangiomas. I buried my head in my hands and shock from side to side while my husband (the level headed one who is also very cool, calm and collected) said yeah that's fine 43 success stories that's great. It doesn't do anything to their nappies by the way in case you were wondering.
Iliana was admitted to the Medical Daycare unit at BCH where she was give an 8ml dose of Propranolol (apologies but I spelt it incorrectly last time) at 11am and then monitored every 20 minutes or so. This included the funniest attempts to take her blood pressure we had ever seen. In the end the best way to do it was for me to hold her leg down as they put a child's cuff on her lower leg and press the machine button. The blood sugar level tests were hugely less funny considering they sliced her foot but like a true pro she just flinched a little and looked at me with a "yeah whatever I'm tough" look.
The trail ended with us having a prescription of one months supply of Propranolol with a few syringes and told to check in with our babysitting paediatrician at our local hospital in two weeks time. Okay so I was happy that nothing happened to our daughter but it was still a bit of a worry that only 43 children had been treated with this experimental drug meant for treating anxiety and heart conditions. Side effects that we had to look out for were drowsiness and not waking after a nap!!!
A bit of a history about the trial........... A child (don't know location sorry) was born with both a heart condition and strawberry birthmark. When they began treatment for his heart condition (with Propranolol) they found accidentally that the strawberry birthmark had reduced in size and eventually disappeared completely therefore identifying the drug as a great treatment for those birthmarks in awkward positions.
So that was it for now. Off we went with baby and drugs in hand.
Thanks for reading xxx
Tuesday, 1 May 2012
Sunday, 23 October 2011
What's that baby got on her eye? If I press it what will happen?
So my decision to start this blog was an easy one, writing it has been the hardest thing in the world and after giving birth 21 weeks ago I thought I could do anything. I thought by writing this that I could share my experiences of being a first time mother with a child who has a strawberry birthmark.
My beautiful little girl was born exactly 21 weeks ago through normal delivery (I won't bore you with the details). She is a bubbly, healthy and playful little angel who loves new things, sounds and colours but 2 weeks after her birth my husband and I noticed a red mark appear on her left eye near her lid. As it was monitored it kept growing becoming thicker in size, redder in colour and expanding width wise. After making the decision to take her to the doctors I was told that she had a strawberry birthmark (or medically a Strawberry Nevus (hemangioma)). After a little persuasion the doctor finally accepted our need to see a specialist as reading up on this condition said that the nevus would continue to grow for up to a year and then shrink within 5 years to nothing not even leaving a mark. If it was anywhere else on her body I don't think I or my husband would have minded but as it is on her eye lid it will inevitably cause issues with her sight and 3D development so off we went to hospital 4 weeks later.
Iliana really put on a great show for the paediatrician's assistant laughing and smiling whilst he examined the nevus. His conclusion was that his boss needed to have a look (of course he would not be prepared to make a decision, I don't think I would like that on my shoulders either). So the paediatrician came in full of jokes and put us both right at ease. Again Iliana didn't disappoint she was full of beans but the conclusion was that a referral to Birmingham Children's Hospital (BCH) would be on the cards, GREAT!!!!
Meanwhile I took my daughter to a few playgroups and was fascinated by how interested children were in her and the "button" on her eye. I laughed out loud when a little girl must have been about 3 years old came running over and stopped just before getting to us with an extended finger slowly moving towards Iliana's eye exclaiming "What's that baby got on her eye? If I press it what will happen?" my first instinct was to push her finger away but then I thought bless she is doing what every child does and that's being inquisitive, although it did remind me of ET.
Anyway the appointment came through after chasing it twice. So my husband took another day off work six weeks after our initial meeting with the paediatrician at the local hospital and started the long journey to BCH at 7am in the morning for a 9am appointment. So 3 hours to get there, 30 minutes in the room to be told by an assistant surgeon that BETA blockers would be the way forward and that although he would agree the big boss surgeon would have to see us too.
Moral of this story is I as a mother I am terrified............................... Now I have to take a number of things into consideration like how BETA Blockers are going to affect my little baby, how often we will be at the hospitals for the next six months and will I be able to balance work and home life to ensure my child gets the best start in her life. This is why I have decided to write this blog to share my experiences and hopefully help others going through this with their little ones. Finally the best thing I heard through this first stepping stone on our journey was that they called Iliana's birthmark an "Angel Kiss" which made me think that my baby is something more special than I ever imagined.
Next post will come once I have gone back to BCH to be advised of the next part of the journey...............
Thanks for reading xxx
My beautiful little girl was born exactly 21 weeks ago through normal delivery (I won't bore you with the details). She is a bubbly, healthy and playful little angel who loves new things, sounds and colours but 2 weeks after her birth my husband and I noticed a red mark appear on her left eye near her lid. As it was monitored it kept growing becoming thicker in size, redder in colour and expanding width wise. After making the decision to take her to the doctors I was told that she had a strawberry birthmark (or medically a Strawberry Nevus (hemangioma)). After a little persuasion the doctor finally accepted our need to see a specialist as reading up on this condition said that the nevus would continue to grow for up to a year and then shrink within 5 years to nothing not even leaving a mark. If it was anywhere else on her body I don't think I or my husband would have minded but as it is on her eye lid it will inevitably cause issues with her sight and 3D development so off we went to hospital 4 weeks later.
Iliana really put on a great show for the paediatrician's assistant laughing and smiling whilst he examined the nevus. His conclusion was that his boss needed to have a look (of course he would not be prepared to make a decision, I don't think I would like that on my shoulders either). So the paediatrician came in full of jokes and put us both right at ease. Again Iliana didn't disappoint she was full of beans but the conclusion was that a referral to Birmingham Children's Hospital (BCH) would be on the cards, GREAT!!!!
Meanwhile I took my daughter to a few playgroups and was fascinated by how interested children were in her and the "button" on her eye. I laughed out loud when a little girl must have been about 3 years old came running over and stopped just before getting to us with an extended finger slowly moving towards Iliana's eye exclaiming "What's that baby got on her eye? If I press it what will happen?" my first instinct was to push her finger away but then I thought bless she is doing what every child does and that's being inquisitive, although it did remind me of ET.
Anyway the appointment came through after chasing it twice. So my husband took another day off work six weeks after our initial meeting with the paediatrician at the local hospital and started the long journey to BCH at 7am in the morning for a 9am appointment. So 3 hours to get there, 30 minutes in the room to be told by an assistant surgeon that BETA blockers would be the way forward and that although he would agree the big boss surgeon would have to see us too.
Moral of this story is I as a mother I am terrified............................... Now I have to take a number of things into consideration like how BETA Blockers are going to affect my little baby, how often we will be at the hospitals for the next six months and will I be able to balance work and home life to ensure my child gets the best start in her life. This is why I have decided to write this blog to share my experiences and hopefully help others going through this with their little ones. Finally the best thing I heard through this first stepping stone on our journey was that they called Iliana's birthmark an "Angel Kiss" which made me think that my baby is something more special than I ever imagined.
Next post will come once I have gone back to BCH to be advised of the next part of the journey...............
Thanks for reading xxx
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