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01-23-2007, 09:55 PM
[left:3d8a35071a]http://www.cherubs-cdh.org/Album/new/hanlon-blake3.jpg[/left:3d8a35071a]Where to begin with Blakeís story? It is such a long story but I guess it starts with my 18 week ultrasound. As you normally do, I went in totally oblivious to the fact that anything at all could be wrong with my baby. After the normal bouts of morning sickness, tiredness and a two day stint in hospital for a burst cyst on one ovary, I went in to that room beaming and looking forward to seeing my baby on the screen. We all know that the normal screening takes around 20 minutes but I was there for what seemed like an hour. Finally the sonographer said she was having trouble seeing the heart and it was probably just the way the baby was laying but she wanted to get the Doctor in to have a look. I said sure and was still totally oblivious to the fact that anything could be wrong and didnít think anything more of it. I was just happy to be looking at my baby on the monitor. After awhile the Doctor came in and started scanning. He switched off the machine, told me to ďwipe myself offĒ and he was going to tell me what they had found. A tumour in my babyís chest! CCAM, this too comes with the same amount of problems as CDH only we werenít told anything about CCAM except that we had to wait six weeks, then go back and have another ultrasound to see if this "tumour" had grown at the same rate as the baby or faster. Hopefully, it wouldn't grow at all.

Six weeks went by, I was 25 weeks pregnant. The same doctor did the scan and again said that my baby had a tumour in his chest, it had grown but not at the same rate as the baby so that was something positive. The doctor did mention CDH but said that there was no indication that this was what was wrong with my child. I had to wait another 4 weeks, go back and have another scan.

Anyway 4 weeks later and here I was at 29 weeks, walking in to the ultrasound clinic still not sure what on earth was going on. I certainly was not enjoying my pregnancy because I knew something was wrong but didnít know if it was life threatening or not. Nothing had really been explained to me. It was at this scan that the proper condition was diagnosed. Of course when the doctor mentioned bowel in the chest, I just lost it and started crying saying this was worse. Unfortunately the Doctorís bedside manner left a lot to be desired and he couldnít wait to get me out of the room, so I went away not really knowing much about this condition called CDH.

I was later referred to the Royal Womenís Hospital at Randwick because this is the only hospital that is close to home that dealt with high risk pregnancies. I have to say that the staff that I was involved with really did care and they took the time to explain everything to me. I spent a day there meeting with specialists, having an ultrasound and an MRI, meeting the social worker and the high risk obstetrician. He was very forthcoming and didnít hold anything back. His words - ďPrepare for the worst, but hope for the bestĒ. He also mentioned that it was one of the worst cases he had seen for some time. Needless to say I walked away that day not feeling very positive at all.

The next few weeks were very busy and very draining. With hospital visits every two weeks, work, looking after my 3 year old and keeping up with the normal everyday things that life throws at you I didnít have a great deal of time to ďTHINKĒ. As the delivery date got closer I started to develop a feeling that something really bad was going to happen. When I tried to explain this feeling to people, they would just look at me. There was only one person I told who seemed to take me seriously, and as she said a mothers instinct is very strong.

My waters broke on the evening of Saturday 22 June 2002. My daughter had been induced so I didnít know what it was to have my waters break naturally so I honestly didnít know it had happened. The only reason I knew something was up was when at 5.30am I woke up and noticed the bed sheet was stained pink. So I rang the hospital and they said to monitor for contractions and to ring back in 1 hour. During this hour my husband and I talked about and knew that once I went to the hospital I wouldnít be coming home until our son Blake had been born. After the hour, I rang and they asked that I come in. My husband and I calmly got organised, dropped my daughter off at Scottís sisters house and away we went. As my husband said ďHere we go, are you readyĒ. No I wasnít but I had no choice. I was admitted that day because I lived a fair distance from the hospital and because of Blake's condition. I was only 2cms dilated but they wanted me to go into natural and established labour. If my baby didnít arrive by Tuesday morning they were going to induce me. So Sunday turned into Monday and still nothing. I was lucky to be sharing a room with a really nice lady who was in for Pre-Eclampsia so we managed to keep each other occupied.

It was now midnight on Monday night. We were waiting for the nurse to come in and do her final rounds. Obviously she was running really late and finally came in. She didnít have too much time for either of us, so she hooked me up to a Foetal Monitor and took Joís stats. Joís heart rate was 44 so the nurse went and called the night registrar. Meanwhile I was having small contractions and was watching my sonís heart rate on the screen. The registrar came in to find out what was happening with Jo and I was watching in horror as my sonís heart rate nosedived down to 60. I panicked and screamed for the registrar, the nurse came running and they were both trying to figure out if it was my heart rate or my babyís. The registrar then got the senior Doctor and before I knew it I was calling my husband to get him into the hospital because I was going to the delivery suite to monitor the heart rate. That must have been when the doctor went out to ring the HR Obstetrician because she came back in and said they werenít happy with what was happening and that he had to be delivered immediately. Forms were signed, tears started flowing and my husband finally arrived only to see me on a gurny being wheeled down to the operating theatre.

After what seemed like an eternity Blake finally arrived at 2.07am on Tuesday 25 June 2002. He wasnít doing so well and all I really remember apart from being scared senseless was my beautiful boy surrounded by lots of people in green scrubs being given CPR. Scott & I were just crying and watching and trying really hard to be strong, all I wanted is what every mother wants and that was to hold my newborn. I wanted to tell him how much I loved him, how much we needed him but unfortunately we werenít given that chance. We got the thumbs up from one of the people in scrubs and I saw him being taken away.

Finally I was in recovery and I was just so anxious to see Blake. Touch him. I was eventually taken to the Maternity unit at which time I demanded that they take me to NICU. All they kept saying was that I had just undergone a major operation and they didnít think the bed would fit into the NICU. I didnít care, I just had to see Blake. So they transferred me to a wheelchair and I finally got to see my baby up close. I couldnít stay for long, the doctors had work to do, so I touched him and told him I was there and that I loved him and that I would see him again soon. Unfortunately, I didnít see him again until Tuesday evening. All day I was slipping in and out of consciousness. Too much morphine!

Tuesday evening my brother finally arrived from Melbourne and I proudly walked him down to NICU to show off my beautiful boy. He looked so small with all the tubes. In fact he was only 4 pound 10 ounces so he was tiny. They can give me no medical reason why he was so small. He was born full term. Again, I touched him and told him how much I loved him and that I was so proud of him. I told him he was doing well and to hang in there and I would see him in the morning. I thought I needed my rest if I was to give him the 100% emotional and physical support that he would need. All the visitors left and Scott & I were finally left alone to reflect on the last 24 hours. We both fell asleep and didnít wake until morning.

I think it was around 6am. Physically I felt wonderful. I got up, had a shower and was looking forward to spending the day next to Blakeís bed. I could finally be with him. I rang down to the ward and told them I was on my way. They asked that I wait until 7.30am because they were having a change over of staff. So I waited and Scott & I were talking about how he must of done OK during the night because they didnít call us. Our bubble was to burst soon after, because a Doctor walked in not long after that and advised us that Blake had had a really bad night. The machines were up at 100 however he was still deteriorating and if he kept slipping there was nowhere else they could go. Scott ran out of the room, and I hobbled down to NICU. As soon as I walked in Scott said ďYou had better tell KirrilyĒ and all I remember is the doctor saying, ď There was nothing more they could doĒ. Why? That is the million dollar question I will ask for the rest of my life. Everything from this point is hazy. We called our family to see Blake for the last time and to be there while he was baptised. I couldnít believe this was happening. Everything seemed to slow down, we were waiting for everyone to get there. Didnít they care, because they seemed to be taking their time. It was Wednesday morning so they had to fight peak hour traffic, we just wanted Blake to be at peace. We didnít want him to suffer unnecessarily. Finally everyone was there except my daughter Amy. They forgot Amy! I rang the kindergarten and asked my friend Natalie to bring her in. Natalie has since told me that she has never driven so fast in her life. Amy finally arrived and she got to hold her little brother for the one and only time. Blake was baptised and everyone got to have a cuddle. After that everyone was asked to leave. Because Blake couldn't swallow he had to have his mouth cleaned and suctioned. It was here that I left Scott with Blake and went downstairs to buy my son an outfit. I looked for something but nothing was appropriate. What could be when you know your son is not going to live. I eventually bought a little angel bear, with blue wings and took it back upstairs to give to him. He had opened his eyes. Scott told me Blake had opened his eyes! I missed him opening his eyes! I guess in the scheme of things it is not important but to me it is a major thing that I missed. Scott sat down, and cuddled Blake. They took his tubes out and while Scott & I cried and told our son it was OK to go, he passed away. He didn't suffer and for that I am grateful. Scott asked if I wanted to hold him and of course I said yes. As I was nursing him he moved! What was this! He wasn't gone, he was fighting, I smiled and told Kate our midwife that my son was a fighter and he didn't want to go but she just said that it was the organs shutting down.

After what seemed like an eternity we went to the privacy of our room. This was in the maternity unit and all I could hear were babies crying. It was not fair. All I wanted was to be like the other mothers. Happy and full of the wonderment that is a newborn baby, but this was not to be. We spent that night with Blake. I asked that we be moved to another ward because I couldn't stand the sound of the babies. We watched the football as a family, and we bathed him and dressed him. I think I must have kissed every inch of his perfect body. He still smelt like a newborn baby. I took all of that in. His smell, the way he felt, how soft he was, how beautiful! I didn't sleep, I couldn't. I wanted to spend every second that I could with him. I sang to him, told him stories, took him outside and showed him the stars. It was a cold night! I kept him wrapped up snug and tight, and the whole time all I wanted, all I prayed for, was for some miracle to happen and for him to open his eyes and cry............and before I knew it, it was time to say goodbye. The hardest thing I have ever had to do, will, ever have to do was to hand him over, and as I handed him over to Kate I just kept kissing his forehead and kept saying "I love you, I love you, I love you" and with that I turned and walked out of that room and away from my baby.

I will not say that Blake is with his maker, because this has certainly tested any faith I may have had. All I will say is that Blake is at peace, he is not suffering and I know that wherever he is, he is looking down on me and my family and making sure that we are OK. He IS the shiniest star in the sky.



Beautiful little baby boy

Loved and missed by all

Angels wings hold you

Kindred souls adore you

Eternal love shall be


Written by Blakeís mum, Kirrily Hanlon (Australia)
2002