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01-23-2007, 04:41 PM
[left:c59580d8c1]http://www.cherubs-cdh.org/Album/new/scott-natasha.jpg[/left:c59580d8c1]To our special princess, Hope- After 6 long years of trying and fertility treatment, you were born, Hope. You were a wanted baby. At a 20-week scan, we were told there was a problem, and you were diagnosed with a right-sided diaphragmatic hernia. At 28 weeks, we were told you were a little girl, so that’s when we decided to call you Hope. Doctors told us you were rare, as only 1 in 10 babies get right-sided hernias, and you were even rarer because usually only little boys get these sort of congenital defects. At 30 weeks, I had 4 pints of fluid drained from my stomach, as there was too much around you. Three weeks later the fluid had returned, and I went into labour. We were rushed from our home in Seaham, County Durham to the Royal Victoria Infirmary in Newcastle.
On 6th July 2000, at 3:57 a.m., you were born, weighing 5 lbs 7 ½ oz. You were rushed straight to the Special Care Unit, where you were put on a ventilator, then transferred to Ward 3 Intensive Care. Your first 24 hours were the scariest of our lives. We were advised to get you baptized, as they didn’t think you would survive the night. We didn’t want to tempt fate. Doctors were doing everything they could, but they didn’t hold out much hope. It was amazing seeing you improving hour after hour. I don’t think anyone could believe how quickly you seemed to improve. After 6 days and many sleepless nights, you were operated on. They brought down your liver, intestines and gall bladder from your chest and repaired your diaphragm. Your operation lasted 3 hours, the longest 3 hours of our lives. Five days after your operation, they tried you off the ventilator but you only managed 1 hour; you just weren’t ready. Doctors put you back on the ventilator. On 28th July, doctors tried you off the ventilator again, one hour led to another, then another.
After 4 weeks and 6 days, you were transferred to Sunderland Neo-Natal Unit, to be nearer to home. Then on 26th August, you were allowed home on oxygen. It was only when you were transferred to Sunderland, were we told how lucky we were to have you with us and that you were aptly named. Unfortunately, after 4 weeks at home, you were admitted onto a Paediatric ward, with what doctors thought was probable viral pneumonia. After a couple of weeks, you were transferred back to the Neo-natal unit because your carbon dioxide levels were up. Doctors decided to put you back on the ventilator as you weren’t managing to exchange your gases. You had a scan done, which showed your lungs were small. We knew your right lung was damaged, but we never knew your left one had been damaged, too. Over the next 4 weeks, you’d been on and off the ventilator twice. Then on 16th November, your CO2 was really high and you were put back on the ventilator. You needed help to exchange the gases, as you weren’t managing to do it by yourself, and your lungs were beginning to collapse.
On 7th December, you were really poorly. Your right lung had collapsed, and doctors were very worried about you. We got you baptized that day. The same afternoon we met the Queen. She came to officially open the new wing you were in. She asked about your lungs, and the doctor told her that you were very poorly and that your lungs needed time to grow. On 13th December, you had a tracheostomy done. Over Christmas you seemed to improve; we had some wonderful times, smiles and giggles and cuddles. Mind you, we had our ups and downs too, infections, your lungs collapsing and those teeth. I think you suffered more with those teeth than anything. Everything else you took in your stride-- needles, injections, blood being taken from you, x-rays, and having to have tubes replaced.
Then on 28th February, you had another bronchoscopy done. It showed no improvement in your lungs. The specialist decided to put your details on the Internet to see if any other doctors had any different treatments to try on you. They couldn’t give you a transplant, as you were too young. You had another CT scan on 2nd March, but the results were sent to the specialist at Newcastle.
Then on 9th March, you took a turn for the worse, for all you were being helped with your breathing, you still weren’t managing very well. Over the next 2 days, you gradually deteriorated. Doctors did everything they could for you until there was nothing else they could do. At 5:35 p.m., on 11th March 2001, doctors switched off your ventilator, and you peacefully passed away. You were 8 months old; you grew but your lungs didn’t.
It’s amazing how many people’s hearts you touched. Doctors and nurses were like uncles and aunties to you. They were your second family. You’d spent 7 months of your short life in hospital, but you never missed out on anything. When you went, a little part of everyone went with you.
We’ll never forget the day our Little Princess met the Queen. You left us many memories, good and bad, and made so many new friends. If it wasn’t for doctors and nurses at Sunderland, we wouldn’t have had you with us for so long. Doctors at Sunderland gave you that chance. They felt they owed it to you to give you the chance to grow new lung tissue. It’s really hard not having you with us now, but if you taught us anything it was “whatever life throws at you, you just keep going,” just like you always did. Friends and family turned up to wish you “goodbye,” as many people did, even your aunties and an uncle from the hospital. We can’t thank them enough for all our precious memories of you.
Written by Hope's Dad, Mark Scott (Great Britain)
2001
On 6th July 2000, at 3:57 a.m., you were born, weighing 5 lbs 7 ½ oz. You were rushed straight to the Special Care Unit, where you were put on a ventilator, then transferred to Ward 3 Intensive Care. Your first 24 hours were the scariest of our lives. We were advised to get you baptized, as they didn’t think you would survive the night. We didn’t want to tempt fate. Doctors were doing everything they could, but they didn’t hold out much hope. It was amazing seeing you improving hour after hour. I don’t think anyone could believe how quickly you seemed to improve. After 6 days and many sleepless nights, you were operated on. They brought down your liver, intestines and gall bladder from your chest and repaired your diaphragm. Your operation lasted 3 hours, the longest 3 hours of our lives. Five days after your operation, they tried you off the ventilator but you only managed 1 hour; you just weren’t ready. Doctors put you back on the ventilator. On 28th July, doctors tried you off the ventilator again, one hour led to another, then another.
After 4 weeks and 6 days, you were transferred to Sunderland Neo-Natal Unit, to be nearer to home. Then on 26th August, you were allowed home on oxygen. It was only when you were transferred to Sunderland, were we told how lucky we were to have you with us and that you were aptly named. Unfortunately, after 4 weeks at home, you were admitted onto a Paediatric ward, with what doctors thought was probable viral pneumonia. After a couple of weeks, you were transferred back to the Neo-natal unit because your carbon dioxide levels were up. Doctors decided to put you back on the ventilator as you weren’t managing to exchange your gases. You had a scan done, which showed your lungs were small. We knew your right lung was damaged, but we never knew your left one had been damaged, too. Over the next 4 weeks, you’d been on and off the ventilator twice. Then on 16th November, your CO2 was really high and you were put back on the ventilator. You needed help to exchange the gases, as you weren’t managing to do it by yourself, and your lungs were beginning to collapse.
On 7th December, you were really poorly. Your right lung had collapsed, and doctors were very worried about you. We got you baptized that day. The same afternoon we met the Queen. She came to officially open the new wing you were in. She asked about your lungs, and the doctor told her that you were very poorly and that your lungs needed time to grow. On 13th December, you had a tracheostomy done. Over Christmas you seemed to improve; we had some wonderful times, smiles and giggles and cuddles. Mind you, we had our ups and downs too, infections, your lungs collapsing and those teeth. I think you suffered more with those teeth than anything. Everything else you took in your stride-- needles, injections, blood being taken from you, x-rays, and having to have tubes replaced.
Then on 28th February, you had another bronchoscopy done. It showed no improvement in your lungs. The specialist decided to put your details on the Internet to see if any other doctors had any different treatments to try on you. They couldn’t give you a transplant, as you were too young. You had another CT scan on 2nd March, but the results were sent to the specialist at Newcastle.
Then on 9th March, you took a turn for the worse, for all you were being helped with your breathing, you still weren’t managing very well. Over the next 2 days, you gradually deteriorated. Doctors did everything they could for you until there was nothing else they could do. At 5:35 p.m., on 11th March 2001, doctors switched off your ventilator, and you peacefully passed away. You were 8 months old; you grew but your lungs didn’t.
It’s amazing how many people’s hearts you touched. Doctors and nurses were like uncles and aunties to you. They were your second family. You’d spent 7 months of your short life in hospital, but you never missed out on anything. When you went, a little part of everyone went with you.
We’ll never forget the day our Little Princess met the Queen. You left us many memories, good and bad, and made so many new friends. If it wasn’t for doctors and nurses at Sunderland, we wouldn’t have had you with us for so long. Doctors at Sunderland gave you that chance. They felt they owed it to you to give you the chance to grow new lung tissue. It’s really hard not having you with us now, but if you taught us anything it was “whatever life throws at you, you just keep going,” just like you always did. Friends and family turned up to wish you “goodbye,” as many people did, even your aunties and an uncle from the hospital. We can’t thank them enough for all our precious memories of you.
Written by Hope's Dad, Mark Scott (Great Britain)
2001