Friday, April 11, 2008

Just got a call from...

An area midwife. She's doing a paper on palliative care for newborns (ie. Joshua's type of care). She asked me about my experience and about what was good and bad. So that was really good. I'm hoping that what I've told her will be helpful to other parents and families in the long run.

It has been my hope all along that our story/situation/experience/knowledge will be a help to doctors, nurses, midwives, researchers, parents and families.

Hey Marie - I told her about you and baby Elijah too. :)

And she agreed. Most babies with neural tube defects are aborted. Geez....
No wonder doctors and nurses didn't know what to do for Joshua. All the Joshua's of this world are being killed off.


  1. Doctors in the U.S. aren't being trained to deliver vaginal breeches either. It's scary when a women with a breech baby comes up to deliver, dilated and pushing, and the doctors think they can actually get her in for a c-section before the baby comes.

    Another one of my pet peeves is when doctors offer advice on nutrition, especially pediatricians and OBs because most of them have never had even one course in nutrition in medical school.

    I'm glad you got a chance to help educate people by sharing what you learned from your son. Joshua's legacy lives on...

  2. Wow. I felt like I'd been slugged in the gut when I read that last line. How sadly, tragically true...


  4. What I wouldnt give for one more touch or hug

    Our precious little baby had a birth defect called Anencephaly (the major portion of his brain and the top part of his skull had failed to develop). Incompatible with life we were told.
    They told us the only thing we could do was Induce our son. I was 20 weeks pregnant

    I was also scheduled to have an U/S the Wednesday to check on how many weeks I was along. The Doctor that thought maybe I was 19-20 weeks. I went in and we had a great U/S the baby was head down and they said they couldn’t get a good picture of the head but everything seemed to be really good. We were told that I was 18 weeks and we went home with our first baby picture. We were on such a high! Showing off our little angel to everyone!
    Life was great! We were getting married in 3 days and we had found out that our baby was healthy! The next morning as we were getting ready to get some wedding things done the phone rang and the U/S lady was on the phone. She asked if we could come back in that day for another U/S as the Doctor wanted to get a better picture of our baby’s head. We went in and had the second U/S. Nobody talked they took about 15 mins and then said they had to talk to the Doctor. They left the room and left Allan and I wondering! Deep down I knew that there was something that was really wrong and would mean our baby wasn’t going to live. They came back to the room with 4 other people and right at that moment I had a feeling come over me of to just get out of that room! I asked to be excused to go to the toilet and just started to bawl! After about a minute, (but at the time seemed like hours) I went back into the room where they all looked at me and told me what was wrong. I cried all I could do was hold on to Allan and cry. Allan was crying. My Mum was also crying. All we could do was cry.
    They were telling us what was wrong and what we had to do. I really can’t remember what they were saying. It was like an outer body experience. Just seeing Allan and I crying and everybody trying to explain what had happened. They told us to wait for the Doctor to come and talk to us. We waited and when he came he was so cold about it almost like "Well this happens and get over it! " He told someone that he would write me a prescription for Valium! I was very upset and that was the last thing I wanted!
    We left the hospital. Knowing that they couldn’t do anything that day. We went to Allan’s parent’s place and told them what had happened and rung people that needed to know what was wrong. I think that people thought maybe we shouldn’t go ahead with the wedding. It was a hard decision. But when we found out that I was pregnant Allan and I decided to bring our wedding forward. So our baby would be born in wedlock. We said that if something were to happen we would still be married early.
    Denver must have really wanted us to be married then. We talked and decided that the wedding would go a head! From there as hard as it was I know that we made the right decision!The next day the Friday before the wedding we were kept busy setting the hall for the reception it kept my mind busy. But boy did I have my moments! I would hate to think how I would have been if I didn’t have anything to do! That afternoon we went back to the hospital to discuss what we had to do. The midwife was really nice and told us what to expect. Also we were told that we could hold our son, name him, bury him and even have a birth certificate. We said that we would come in Monday 21st to be induced.
    On the Monday morning we went in, and I would have to say that Allan and I were as scared! We had wondered if we were doing the right thing? Could they be wrong? The doctor came in and it was a different doctor! (Thank goodness) He was wonderful! We told him of our fears. He asked if we had seen the U/S showing where the brain hadn’t grown. We hadn’t b so he got them and showed us what had happened and showed us there wasn’t a mistake and there was really nothing that could be done to help our son.
    We went back into the room and he started the first treatment. I had 4 treatments that day with only a few contractions that afternoon then nothing happened. They said that they would start the treatments again the next morning. Allan stayed the night with me in hospital! (I mean we were on our honeymoon) We hopped into the little bed together and tried to sleep! The next morning Tuesday the 22nd of August they started the treatments again, they said that they only had 3 left and after that if they didn’t work I might have to go home and wait a few days. (We weren’t very keen on that idea and hoped that Denver would come that day)
    The day went on and nothing much happened until around 3pm when I started to have contractions again like the day before. But they didn’t stop this time they got stronger and more frequent. By around 7pm I was having them every 5-6 mins and boy was I starting to feel the pain! I asked for some medication, they gave me a pethidine drip. I had my first dose of that, and WOAH I was almost knocked out! They turned that down and I was on a machine that I pressed when I need more relief from the pain.
    Around 8:30pm with my contractions 2-3 mins apart I felt the strongest pain and all this pressure I thought OH MY GOSH the baby is coming! I told Allan and my Mum and they said to let them have a look they said this purple thing was coming out! (It was my waters braking! Mind you none of us thought about that! I think we all had forgotten about my waters braking. And I hadn’t gotten to that part in the baby book yet?) So with Allan and Mum running around the end of the bed calling for the nurse, me feeling like I was going to explode! The nurse came in the waters broke and made a mess! Looking back at that I have to laugh it was like something out of a comedy film! They asked me if I would like to sit up as that may help the baby come down. So I sat up and about 15mins later on a contraction Denver was born. He was so tiny weighing only 100 grams he was 19cms long. But he was perfect! I was worried that he would look weird or something. You didn’t even see where his brain hadn’t formed. All I could see was his 10 toes, 10 fingers and long long legs! Tiny little finger nails! Allan said that he had my nose and lip. And as all proud fathers do say their son takes after them! We held him, talked to him not wanting that moment to end. It was a feeling that I could never explain. Happy and sad all in one.

  5. Isnt it sad but true that most babies like Joshua are Aborted... I do think though that yours + Joshuas story being told may change alot of peoples minds on the subject or at least give them more to think about... Good luck with the birthday party tomorrow... We had one last week for my 3 year old and oh my lord!!

  6. YIKES!!!!!!!!!!! I'm glad that Joshua's life was significant enough that they would want to learn what they could do to assist families with special babies.

  7. I'm glad you can make a difference and educate the nurses and doctors a bit.

    I just wanted to send you a hug and post a link.

  8. Marie, can you leave your web address in the comments here so we can all check in on you as well? I went to find it in old comments and couldn't find it.

  9. It's sad to think of all the babies being aborted :(