Tuesday, May 19, 2015

May 19 - Dear Nicholas Sparks (Guest Blogger Debbie Blakley)

We found out we were expecting our 6th baby in September 2005. It was a very welcome surprise. The early days were difficult with nausea and tiredness. October when the nucal scan was done and the results looked fine. The sonographer couldn't see the baby's stomach on that scan but said at that stage it wasn't a problem as it was probably just empty, in hind site it was probably already in his chest. We decided not to have amnio as although I was 44 we wouldn't have taken any action anyway whatever the results showed. The pregnancy continued nicely and we were curious to find out if we were expecting a little boy or girl.

Our life changed forever on 23rd December when we went for the routine 21 week scan. At first the sonographer seemed to be struggling to get a good picture. She told us we were expecting another little boy which was great news. After about 20 minutes she told us she couldn't get a good picture of his heart due to his position and asked me to go for a walk to see if the baby would change position. At this stage we were both oblivious to anything being wrong. After 5 minutes we came back and she tried again. The scan was stopped and she said to us that our baby's heart and stomach were in the wrong position. I had read about someone having a congenital diaphragmatic hernia in the paper just 3 days before this and I immediately knew what she was talking about. We were devastated.

We went to see the consultant who told us more about the condition and said that sometimes it can be related to other genetic abnormalities but in our case he did feel it was an isolated defect as nothing else on the scan appeared to indicate any other problems. He said our baby had a 60-70% chance of survival. He did offer us amnio but we declined. He said we would be regularly monitored and arranged a whole series of meetings with the neonatal consultant, pediatric surgeon and many more scan appointments. We were then sent home with a follow up appointment.

On the way home we sent a message to all our friends so they all knew and then had to face our children who were wondering if they were having a brother or sister. It was so hard telling them this news but we wanted to be honest. One of them asked if the baby would die and we said to them it was a possibility but we were going to hope and pray that he would survive. Christmas was very hard. We just went through it like zombies trying to be happy for the children but devastated. I found CHERUBS on the internet and was very well supported throughout by CHERUBS-UK and CHERUBS members all over the world via the CHERUB'S listserv. We decided to name our baby son Joel ( strong willed ) Archie ( brave) Jed (beloved by the lord ) and Abel as Abel means breath and we knew this would be Joel's problem. I set about eating anything that helped lung development including lots of dark organic chocolate that contains lots of nitric oxide.

We attended all the various appointments waiting to hear someone say it would be alright which no one could say. They all said that CDH can be very unpredictable and you cannot predict how the lungs are developing. We had an echo cardiogram which showed Joel's heart was severely squashed over to the right of his chest but appeared normal in its development. Our friends and families all rallied around trying to be positive and many of my work colleagues who are in the medical professional talked to me about their experiences with this cruel defect. The scans indicated Joel was growing well and he grew a healthy head of hair. I gave up work a little earlier than planned and suffered badly with my pelvis. At about 28 weeks I developed polyhydramnios which I knew was a bad prognostic sign. I was offered an amnio reduction which I refused as I was scared it would start labour off and I had been told that the longer Joel stayed in me the better for him. I was also told a good birth weight would help. I did start getting tightenings and at 34 weeks had 2 steroid injections to help mature his lungs if he came early. The decision was made for induction at 38 and half weeks so everyone could be ready for our precious baby's entry into our world.

The induction went very well. My waters were broken and there was lots and lots of amniotic fluid. I wasn't allowed an epidural because of a clotting disorder I have and had decided I didn't want anything like pethidine that could affect his respirations although the doctors said it really wouldn't make a difference as Joel would be intubated straight away. So I decided to do it with just gas and air and Robbie Williams blasting down my walkman!!!!!!For me this was a challenge as I have a very low pain threshold. The syntocinon infusion was started after two hours and about an hour later Joel's heartbeat took a dip from which it didn't recover very quickly. I was put on the bed, told not to drink anything else, all jewelery etc removed in case the doctors decided to do a caesarean. The doctor examined me and put a fetal scalp clip on Joel's head to monitor him more accurately. Joel's heart beat recovered and the doctors decided he was fine and had probably just grabbed his cord!! After this scare my labour continued without anymore drama. I was looked after throughout by my friend Sarah who I trained as a midwife with. She is a wonderful person and was fantastic throughout. Joel finally made his entrance into our world at 20:12 hours weighing 8lbs 8oz and pink with an initial apgar score of 7 @ 1 minute. He was intubated immediately by the neonatal team. Joel was then briefly shown to me before being whisked off to the neonatal intensive care unit. He had one eye open and looked at me. To me he looked frightened and I gently stroked his cheek and told him not to worry it would all be okay. That moment sticks in my mind so vividly now, it was the only time I saw his eyes open.

David and Sarah went around to NICU about 15 minutes later and came back saying Joel was on the oscillator and was ok. By the time I got round there 30 minutes later the consultant said he was now also on nitric oxide and maximum ventilation and if we wanted to get him baptised we needed to do so now. He was very poorly. It was such devastating news. The chaplain came and with David and I at Joel's side along with the nurses Joel Archie Jed Abel was baptised. We were told they were taking it hour by hour and that they were in contact with great Ormond Street Children's Hospital with a view to transferring Joel their to go on ECMO. This is a special heart lung bypass machine that can sometimes help these babies. He had a brain scan which was normal and we were waiting for an echocardiogram too. We were asked to go back to our room as they had a new baby being admitted and parents are asked to leave the unit when this happens. The consultant also felt we needed the rest. She promised to come and get us if Joel's condition changed. We didn't sleep every time we heard footsteps we thought they were coming to us. I held Joel's photo all night. By 06.00hrs we could wait no longer and went round to the neonatal unit. Joel was the same but had suffered a right pneumothorax overnight and had a chest drain inserted. We were told they were going to try Joel on a conventional ventilator instead of the oscillator because he could not be transferred for ECMO on the oscillator. We were also told if he was transferred we would not be able to travel in the ambulance with him and they were very concerned he would die in the ambulance. Joel however could not maintain his oxygen levels on the conventional ventilator and became very blue so he was put back on the oscillator. We called our family and they brought our children Sam, Jessica, Joshua, Jacob and Ben up to see their baby brother it was very, very sad. As our families left they lifted Joel out of the incubator and for the first time I got to hold my precious son. He was so beautiful. He laid on our laps for about 2 hours still attached to the ventilator. We cuddled and kissed him, we told him we loved him so much and we also told him that we understood if he couldn't fight anymore. We wanted him so much to stay with us but we told him that we understood if he couldn't stay. It was the hardest thing we have ever done. Joel's heart was slowing down all the time. Although they were still trying to save him nothing they did was making any difference. Joel's nurse went for a very quick break and left another nurse with us. When she came back Joel suddenly started having ectopic heartbeats and his nurse said this was very significant and removed his ventilator tube so we could hug our beautiful little boy close as he died. At 14.00 hours our precious little boy left us. It was the worst moment of my life. Just 17 hours, 48 minutes after our beautiful baby entered this world he left us again. We sat with Joel in the neonatal unit for a while then we went to a bedroom and waited while all Joel's tubes etc were removed. He was brought to us very quickly and we spent a very special 5½ hours with our son. We were able to bath him, dress him, and take hair cuttings, hand and foot prints and lots and lots of photos. It was very, very special. It was so hard to leave him there. Just 36 hours after we had left home we arrived back empty after having given birth too and lost our beautiful son. The following days passed in a blur. Friends and family took over the cooking and looked after us.

Joel came home to us the night before his funeral. It was lovely having him home here surrounded by his family. We had all put things in his coffin such as photos, letters, little trinkets and a bible. His coffin was tiny, white with coloured balloons over it. Joel's funeral was lovely. Many people came and we had a lovely service at our Methodist Church. David carried Joel in to Tears in Heaven and we both read poems. David read "I'll be there" and I read "In a baby castle". We had music by Keane Bend and Break and you'll be in my heart by Phil Collins. All the words were so relevant. Judith read a Child's angel and Sarah read Gods Loan. We left the church to Robbie Williams Better Man, the same song that was playing when Joel entered this world.

We choose a beautiful cemetery near where we live for Joel to be buried. It is like a big garden and has many beautiful trees and flowers. The birds are always singing there. As he was laid to rest the minister said a very special verse from the bible that had given me lots if hope when I was pregnant.

For I know the plans I have for you declared the Lord. Plans not to harm you but to prosper you, plans for hope and for a future. Jeremiah 29.11

It was very special

We had chosen not to have a post mortem but recently went back to meet the consultant. Joel's blood gases had never been normal and she felt he had lung hypoplasia along with the effects of the CDH. This is a devastating defect

We miss our special little boy so, so much. Our lives will never be the same and this little boy although with us for such a short time had made a huge impact on our lives.

Joel's mom, Debbie Blakley (Great Britain)

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