Jack's Journey
My Diary, written by Jack's Mummy, Shirell
5th November 2012 - Pregnant
It was a day full of mixed emotions shocked, scared, happy and excited!
7th December - Today I went to meet my midwife for the first time, I was asked a number of questions, she then went on to ask me if I would like the NT screening, I told her I didn't want it as it wouldn't change a thing. Little did I know that this also tested for Edwards syndrome T18 and Patau syndrome T13.
15th December 2012 - Today we went to see our baby for the first time, I was too impatient to wait till 12 weeks so I paid for a private early scan.
It was amazing we saw our baby and heard the heartbeat for the first time, it finally all seemed real!
We were given the due date 12th July 2013
31st December 2012 - At 1:40pm we got to see our baby for the second time
It was a little wriggler and wouldn't stay still, I was asked again if I wanted the NT screening so I said if you can get the measurements then go ahead but if not then its no big deal, as it turned out our little one was too active and he wasn't able to get the measurements he needed.
We were given yet another due date 13th July 2013 so we decided to stick with this one...
22nd February - 20 week scan day
We were over the moon to find out we were having a boy and asked the sonographer to show us and there he was legs up in the air bum out and everything on show there was no mistaking it! He certainly wasn't shy!
She then said I would have to return in a week or so as she was unable to get all the measurements for his heart because he was laid on his side, we didn't think anything of it and an appointment was made for me to return the following Monday.. I had the biggest smile on my face all weekend and nothing could wipe it away...
We chose the name Jack Alexander for him
25th February - Re-scan
I arrived for my re-scan, with just my brother, I didn't think Andrew (my partner) would need to be there.
I was called in straight away, the sonographer asked me what had i been told so i told her that the other lady wasn't able to get all measurements of his heart, she looked puzzled.
She spent about half an hour scanning and concentrating on his heart when she asked me to go for a little walk and then go back as she needed to look at his head but was unable to because he was buried in my pelvis..
Little did I know what I was about to be told... I returned to the scanning room where she spent another 5 minutes or so scanning when she looked at me and said she wasn't happy, she started to explain that his heart wasn't developed properly and that the blood was pumping the wrong way and one of his arteries wasn't formed properly, I was laid on the bed trying not to cry and take in everything she had just told me even though it felt like my own heart had been ripped in two!
She then asked me to take a seat in the room opposite, I asked my brother to come in with me as I didn't know what to expect, she came in and sat down, she then said that she was finding it hard to explain because my partner wasn't there, she did tell me there was a problem with his heart and she was also concerned with his head and hands as these showed some chromosome defects, I automatically thought of downs syndrome. She gave us an appointment to see a specialist in Manchester on Thursdsay.
I was now faced with the difficult task of explaining everything to Andrew whilst he was at work.....
Something Andrew said to me today that ill never forget "And i was just getting used to the idea of being called Daddy!"
28th February 2012 - We had our appointment at St Mary's fetal medicine unit today at 2pm..
As we waited in the waiting room i looked around there were no posters and the walls were white.. then we were called in to the scanning room where we were introduced to the midwife and the specialist doctor who was going to carry out the scan. She spent about 15 minutes looking at his heart, head and hands...
We were then showed to the room next door, the doctor joined us and told us Jack was showing signs of chromosome defects in which i replied 'so its downs syndrome then' i was shocked when she said no that it could be Edwards syndrome to which we replied 'whats that?' she explained a little about it but was too much to take in, we were then offered an amniocentesis (where they use a needle to take fluid from around the baby in the womb) This would tell us for sure what was wrong with baby Jack. I was already prepared to be asked this so i accepted straight away, we were then taken back into the scanning room where they carried out the amniocentesis.
We were then sent home to wait a whole weekend for the results, we were receiving them by phone on Monday or Tuesday.
As soon as i got into the car i googled Edwards Syndrome and i didn't like what i was reading... i spent the next hour in the car crying all the way home... Why us? Why my baby??
4th March - The dreaded phone call
After a long and agonizing day waiting by the phone, my mum decided to give them a call as she didn't want me being on my own when I received the call, they were very nice and offered to go down to the lab to collect the results then they would give me a call back in the next 15 minutes or so.
5 minutes later my phone rang.. "hi it's Lynn from St Mary's fetal medicine unit, I have your results and I'm afraid its not good news, it is Edwards Syndrome, we now have to make a decision......" I dropped the phone on the floor and burst out crying, my mum picked up the phone and put it on speaker but I wasn't taking any of it in so ended the phone call. I then had to tell Andrew....
5th March - I decided we needed to talk with someone who wasn't family or a friend, so at 8.30am I made a phone call to the specialist midwife Pauline and asked if we could see her, she was also going to ask the doctor to come and speak with us as well.
We arrived at the hospital and were shown into a side room. Pauline came in and introduced herself and introduced us to the doctor, he told us that he had only seen one case of Edwards Syndrome and that the little girl lived until she was 4 but she didn't have many problems, he said it was very rare to happen but to happen to someone my age (23) it was even rarer.
Pauline told us she had only seen one case where the baby only lived for a few hours. We were then told about the statistics and the chances of our little boy surviving which were very slim, looking at the results from the amniocentesis our baby had complex heart problems and cysts on his brain (choroid plexus) so was very poorly.
After the doctor had left the room Pauline went on to discuss our options, she said we could carry on with the pregnancy, that would mean it would be classed as a high risk pregnancy and there was still the chance that Jack could pass away by himself at any stage of the pregnancy and if he did survive to the end then he could be born still or only be with us for a very short time. The second option was to terminate the pregnancy (which I was against! I also HATE the word termination!)
She explained that if we were to decide to end the pregnancy that I would have to return to the hospital on Friday 8th March and take a tablet, this tablet would just get my body ready for labour, I would then have to go to delivery suite on Sunday 10th March (Mothers Day) to be induced.
So I asked if I would have to have the injection to stop his heart which I REALLY didn't want as I didn't want to stop his heart, she said if I took the tablet no later than Friday then I wouldn't have to interfere with anything and there could be a possibility that he could be born breathing which made it that bit easier knowing that I was just bringing his birthday forward... We made the decision to induce labour and meet our little boy earlier than we wanted....
7th March - Today we went to the hospital to sign the consent forms, I couldn't believe what we were doing.. it was heart-breaking, I felt like I had just given up on my baby but he was so poorly we had to do what was right for him
8th March - Back to the hospital again! This time to take that dreaded tablet .. I took the tablet then was told to phone the delivery suit at 9am on Sunday morning and arrange a time to arrive to be induced.
10th March- After a sleepless night I made the phone call to the delivery suit at 9am I was told to go up when I was ready. I arrived at 11am we were shown to a large room away from the other rooms with our own entry system, the midwife then explained what would be happening , I was then started off
At about 9.30pm I started getting really bad cramps and started to feel generally unwell, I had a high temperature and couldn't keep anything down not even water... all I wanted to do was sleep! At around midnight I was put on a morphine drip for the pain
11th March - At 4.40am I was woken by my waters breaking..
I was quite relaxed after being on the morphine and was also given oxygen and monitored closely as my blood pressure was high.
A few hours later I suddenly got an urge to push, and before we knew it our beautiful baby boy Jack Alexander was here!
He was born sleeping at 11.13am on the 11-03-13 ... Andrew cut the tiny cord. I cried when he was first born and didn't want to see him straight away, but when I did see him I fell in love with him straight away and I was amazed at how formed he was at 22 weeks with all his finger nails and toe nails... I loved his little feet and couldn't stop looking at them, he was certainly daddy's double!!
We were told we could spend as much time as we needed with Jack. They done his foot-prints and hand-prints for us, he weighed 410g which was better than we had expected, They asked if I wanted to dress him I tried but I was scared I was going to catch his skin as he was so fragile, so I asked the midwife to dress him and I watched.
He did have visible signs of Edwards Syndrome, his head, his hands and ears were the more visible ones.
We spent the night with Jack before saying our goodbyes the following morning... I cried all the way home
5th November 2012 - Pregnant
It was a day full of mixed emotions shocked, scared, happy and excited!
7th December - Today I went to meet my midwife for the first time, I was asked a number of questions, she then went on to ask me if I would like the NT screening, I told her I didn't want it as it wouldn't change a thing. Little did I know that this also tested for Edwards syndrome T18 and Patau syndrome T13.
15th December 2012 - Today we went to see our baby for the first time, I was too impatient to wait till 12 weeks so I paid for a private early scan.
It was amazing we saw our baby and heard the heartbeat for the first time, it finally all seemed real!
We were given the due date 12th July 2013
31st December 2012 - At 1:40pm we got to see our baby for the second time
It was a little wriggler and wouldn't stay still, I was asked again if I wanted the NT screening so I said if you can get the measurements then go ahead but if not then its no big deal, as it turned out our little one was too active and he wasn't able to get the measurements he needed.
We were given yet another due date 13th July 2013 so we decided to stick with this one...
22nd February - 20 week scan day
We were over the moon to find out we were having a boy and asked the sonographer to show us and there he was legs up in the air bum out and everything on show there was no mistaking it! He certainly wasn't shy!
She then said I would have to return in a week or so as she was unable to get all the measurements for his heart because he was laid on his side, we didn't think anything of it and an appointment was made for me to return the following Monday.. I had the biggest smile on my face all weekend and nothing could wipe it away...
We chose the name Jack Alexander for him
25th February - Re-scan
I arrived for my re-scan, with just my brother, I didn't think Andrew (my partner) would need to be there.
I was called in straight away, the sonographer asked me what had i been told so i told her that the other lady wasn't able to get all measurements of his heart, she looked puzzled.
She spent about half an hour scanning and concentrating on his heart when she asked me to go for a little walk and then go back as she needed to look at his head but was unable to because he was buried in my pelvis..
Little did I know what I was about to be told... I returned to the scanning room where she spent another 5 minutes or so scanning when she looked at me and said she wasn't happy, she started to explain that his heart wasn't developed properly and that the blood was pumping the wrong way and one of his arteries wasn't formed properly, I was laid on the bed trying not to cry and take in everything she had just told me even though it felt like my own heart had been ripped in two!
She then asked me to take a seat in the room opposite, I asked my brother to come in with me as I didn't know what to expect, she came in and sat down, she then said that she was finding it hard to explain because my partner wasn't there, she did tell me there was a problem with his heart and she was also concerned with his head and hands as these showed some chromosome defects, I automatically thought of downs syndrome. She gave us an appointment to see a specialist in Manchester on Thursdsay.
I was now faced with the difficult task of explaining everything to Andrew whilst he was at work.....
Something Andrew said to me today that ill never forget "And i was just getting used to the idea of being called Daddy!"
28th February 2012 - We had our appointment at St Mary's fetal medicine unit today at 2pm..
As we waited in the waiting room i looked around there were no posters and the walls were white.. then we were called in to the scanning room where we were introduced to the midwife and the specialist doctor who was going to carry out the scan. She spent about 15 minutes looking at his heart, head and hands...
We were then showed to the room next door, the doctor joined us and told us Jack was showing signs of chromosome defects in which i replied 'so its downs syndrome then' i was shocked when she said no that it could be Edwards syndrome to which we replied 'whats that?' she explained a little about it but was too much to take in, we were then offered an amniocentesis (where they use a needle to take fluid from around the baby in the womb) This would tell us for sure what was wrong with baby Jack. I was already prepared to be asked this so i accepted straight away, we were then taken back into the scanning room where they carried out the amniocentesis.
We were then sent home to wait a whole weekend for the results, we were receiving them by phone on Monday or Tuesday.
As soon as i got into the car i googled Edwards Syndrome and i didn't like what i was reading... i spent the next hour in the car crying all the way home... Why us? Why my baby??
4th March - The dreaded phone call
After a long and agonizing day waiting by the phone, my mum decided to give them a call as she didn't want me being on my own when I received the call, they were very nice and offered to go down to the lab to collect the results then they would give me a call back in the next 15 minutes or so.
5 minutes later my phone rang.. "hi it's Lynn from St Mary's fetal medicine unit, I have your results and I'm afraid its not good news, it is Edwards Syndrome, we now have to make a decision......" I dropped the phone on the floor and burst out crying, my mum picked up the phone and put it on speaker but I wasn't taking any of it in so ended the phone call. I then had to tell Andrew....
5th March - I decided we needed to talk with someone who wasn't family or a friend, so at 8.30am I made a phone call to the specialist midwife Pauline and asked if we could see her, she was also going to ask the doctor to come and speak with us as well.
We arrived at the hospital and were shown into a side room. Pauline came in and introduced herself and introduced us to the doctor, he told us that he had only seen one case of Edwards Syndrome and that the little girl lived until she was 4 but she didn't have many problems, he said it was very rare to happen but to happen to someone my age (23) it was even rarer.
Pauline told us she had only seen one case where the baby only lived for a few hours. We were then told about the statistics and the chances of our little boy surviving which were very slim, looking at the results from the amniocentesis our baby had complex heart problems and cysts on his brain (choroid plexus) so was very poorly.
After the doctor had left the room Pauline went on to discuss our options, she said we could carry on with the pregnancy, that would mean it would be classed as a high risk pregnancy and there was still the chance that Jack could pass away by himself at any stage of the pregnancy and if he did survive to the end then he could be born still or only be with us for a very short time. The second option was to terminate the pregnancy (which I was against! I also HATE the word termination!)
She explained that if we were to decide to end the pregnancy that I would have to return to the hospital on Friday 8th March and take a tablet, this tablet would just get my body ready for labour, I would then have to go to delivery suite on Sunday 10th March (Mothers Day) to be induced.
So I asked if I would have to have the injection to stop his heart which I REALLY didn't want as I didn't want to stop his heart, she said if I took the tablet no later than Friday then I wouldn't have to interfere with anything and there could be a possibility that he could be born breathing which made it that bit easier knowing that I was just bringing his birthday forward... We made the decision to induce labour and meet our little boy earlier than we wanted....
7th March - Today we went to the hospital to sign the consent forms, I couldn't believe what we were doing.. it was heart-breaking, I felt like I had just given up on my baby but he was so poorly we had to do what was right for him
8th March - Back to the hospital again! This time to take that dreaded tablet .. I took the tablet then was told to phone the delivery suit at 9am on Sunday morning and arrange a time to arrive to be induced.
10th March- After a sleepless night I made the phone call to the delivery suit at 9am I was told to go up when I was ready. I arrived at 11am we were shown to a large room away from the other rooms with our own entry system, the midwife then explained what would be happening , I was then started off
At about 9.30pm I started getting really bad cramps and started to feel generally unwell, I had a high temperature and couldn't keep anything down not even water... all I wanted to do was sleep! At around midnight I was put on a morphine drip for the pain
11th March - At 4.40am I was woken by my waters breaking..
I was quite relaxed after being on the morphine and was also given oxygen and monitored closely as my blood pressure was high.
A few hours later I suddenly got an urge to push, and before we knew it our beautiful baby boy Jack Alexander was here!
He was born sleeping at 11.13am on the 11-03-13 ... Andrew cut the tiny cord. I cried when he was first born and didn't want to see him straight away, but when I did see him I fell in love with him straight away and I was amazed at how formed he was at 22 weeks with all his finger nails and toe nails... I loved his little feet and couldn't stop looking at them, he was certainly daddy's double!!
We were told we could spend as much time as we needed with Jack. They done his foot-prints and hand-prints for us, he weighed 410g which was better than we had expected, They asked if I wanted to dress him I tried but I was scared I was going to catch his skin as he was so fragile, so I asked the midwife to dress him and I watched.
He did have visible signs of Edwards Syndrome, his head, his hands and ears were the more visible ones.
We spent the night with Jack before saying our goodbyes the following morning... I cried all the way home