Monday, October 15, 2012

Four Days with Lily Grace

Anonymous upon request

"So from the beginning...

Following an ectopic pregnancy, my husband and I were both delighted and scared at the same time when we found out we were expecting again. A scan at 8 weeks showed the little one to be settled nicely in the womb and so I began to relax. I had a great pregnancy, no sickness or nausea. I'm one of those women that irritates others by sailing through pregnancy without any of the horrible side effects.

At the 12 week scan it was nice to see our little one on the screen. We were getting excited and I was sharing my news with family and friends. Then at the 20 week scan my world fell apart. You know how you go in wondering whether you are going to find out if it's a boy or a girl, how you're excited to see your baby on the screen and from a maternal point of view, trying to hold all that liquid in that means they can see the baby properly? Well, we had all that. I had swallowed enough water to keep an elephant hydrated and was really looking forward to going home with the scan picture to show people.

We'd been in there for a while with sonographer humming while taking measurements. She was a little quieter than normal but I figured she was just concentrating. She told us the baby was being awkward and wouldn't move so that she could see the back so she asked us to wait outside and asked me to jump around a little (with a full bladder!!) to see if we could get the little one to move.

There was a room to one side where we could see people looking at scans on the screens. Nothing clicked in my head as to why they were doing what they were doing, I was oblivious. We were taken back into the room and another person was in there. The explanation that was given is that the first person was a trainee and needed to check her findings.

Again, we thought nothing of it as our hospital is a teaching hospital. It wasn't until we were asked to go into another room with a consultant that I started to think something wasn't quite right. He told us that our baby was seriously malformed, there was only half a brain, no nose, horseshoe kidney, bi lateral cleft and spina bifida.

I can't put into words just what I felt at that point. He very kindly (NOT) offered us a termination. In fact, he told us it would be the best thing to do in our situation. During all of this, my baby was kicking and moving around inside! To this day, I don't know how I got out of that room without hitting the doctor! He was completely matter of fact and void of any compassion.

This was our child he was talking about, not just a piece of trash you can get rid of if you're dissatisfied! Needless to say we asked for a second opinion and I am really glad we did. The next doctor is someone I consider an amazing lady (after my Mum). She squashed just about everything we had been told. There was a full brain with just a small part missing, there was no sign of spina bifida and our baby did have a nose! (I don't know why but this was most important to me at the time. I think my brain was already kicking into protective mode).

Despite this, our baby was still very ill. An amnio was done and a result of T13 (Patau Syndrome) was returned. We did a lot of research into this as we had never head of it. Most people have heard of Downs syndrome and in comparison, Pataus is the 2nd highest chromosome abnormality. We told our new doctor that we wished to continue with the pregnancy and that in our eyes it wasn't up to us to kill our child. Our baby was still moving and growing and so we had hope.

We were given all the information about what would happen, how long we could expect the baby to live and what problems could occur. We decided to find out what sex our baby was because if we weren't going to have a long time afterwards, we wanted to know our baby as specifically and as long as we could. So, we were told we were expecting a little girl and named her Lily Grace.

We had to have appointments with the special care team to discuss her care after birth. I say discuss, but we were told that all they would offer is palliative care, meaning they would keep her "comfortable" until she passed away. Basically, even though we had chosen to continue her life, they would do nothing to help her once she was born. There were times I felt like I was banging my head against a brick wall and even though I had fierce mama bear feelings, I was getting more and more frustrated as no one would help us.

More than once I broke down in tears, not over Lily, but over the attitude of the medical staff. For example,  a small issue they noticed on the scans is that they could never see her stomach filled. This raised issues that maybe her oesophagus wasn't connected to her stomach.

In this case, I asked them if they would operate.
No was the answer.

I asked them if they would put a line in to help keep her hydrated.
No was the answer.

I asked if they could use her umbilical cord to help feed her, you guessed it.
No was the answer.

Their excuse is that apparently we would be causing her more pain to do this. I was fortunate to be put in touch with a lady in America who had dealt with these kinds of things and she told me that these things wouldn't hurt her if they were done properly. So I went back with more ammunition but was literally told until they did the x-ray after birth they wouldn't know for sure what she had and what she didn't.

One thing that we did agree on is that Lily would need to breathe on her own after birth. She would be given suction and stimulation the same as all babies but if she didn't respond, we would let her go. We didn't want her to live her life on a ventilator.

Our little girl arrived 10 days early and she did need suction for her secretions but then she let loose! There was nothing wrong with her lungs! The x-ray showed nothing wrong with her oesophagus so I didn't have to worry about that, either. At this point, looking back, I can see I zoned out. My little girl was here, alive! The nurse gave her the first feed (no idea why) and said she had done great taking 5ml! I thought this was brilliant, but afterwards I realised it was a medicine spoon.

We were able to take Lily home but we had to bring a suction machine as she still needed occasional help with secretions due to her bi lateral cleft. We were feeding her and she was sleeping well. I didn't like putting her down and I didn't like sharing her with other people but I knew other people needed to hold her as she was living on borrowed time.

On the 2nd day we had her at home, she took a turn for the worse and stopped breathing. We tried suction but it didn't work. Our family doctor was just arriving and I asked for help. He told me there was nothing he could do for her. He listened to her heart and told us that it was weak. My husband and I called our elder daughter in and we sat as a family waiting for Lily to pass away.

BUT that little girl surprised us all by taking a big breath, and then another and then another. The doctor was amazed! This unfortunately was just the beginning of the end. Lily started to have fits later that day and so we called out the medical team from Martin House (which is a local children's hospice) and they suggested we take her in so they could help us. They gave her medication so that the fits stopped but nothing could stop her periods of not breathing.

All through the night, her dad and I slept with her in between us. We gave her our blessing so many times to go, to stop fighting but as most children, she didn't listen to her parents. We spent the next morning creating as many wonderful memories as we could. I cannot thank the team at Martin House enough. We had a care worker named Jude who was trying to look after me as well as Lily.

I was only 4 days post labour but I wasn't eating or drinking much. She was trying so hard (and I think she wanted a cuddle from the baby) that eventually I handed Lily over to her while I had some lunch. I had just finished when Lily stopped breathing again. Her dad and I took her to our room and tried taking her secretions. There weren't any. And Lily didn't come back.

She was with us for a miraculous 4 days, 14 hours and 16 minutes."

You can read more about Lily Grace at her CaringBridge site:

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