Daniel Sean Sheffield

Born:  7July 2007 - 9 July 2007

Not Compatible with Life, a diary of keeping Daniel By Kylie Sheffield Kylie (mom to Daniel would love to share her book with you.

Update 29/7/07 A Perfect Day

Hi Everyone. As many of you will know, we held a service to celebrate Daniel's life on Monday 16 July. We wanted to share our day with you all and let you know how absolutely wonderful it was. Paul and I picked Daniel up from the funeral home at 7.30 am and he looked just the same as when we left him - beautiful. We drove home, taking his casket with us, but I was able to hold him in my lap and it was so good to have him in my arms again. We spent the morning together at home, all taking turns of holding and talking to Daniel, and Gabe lay beside him on the bed for quite a long time just being close to him and chatting to him softly. We washed him and dressed him ourselves, singing and talking to him all the time.

Our pastor and my two midwives arrived at 11.00 for the ceremony, so we all headed downstairs to the garden, where we had set up a nice spot under our biggest tree. It was a gorgeous Dry Season day (here in the north we only have two seasons: the Dry and the Wet) with just a slight breeze taking the edge off the heat. The service itself was quite short and simple but exactly what we wanted. The pastor said some lovely words and read Psalm 139: 13-16, then Gabe read (all by himself - he's such a good little reader!!) a verse that Paul had written for Daniel from the three of us.

We then sang 'Danny Boy' and 'Two Little Boys', both songs Gabe and I have been singing to Daniel every night since I was about 20 weeks pregnant. After the service we were able to keep Daniel with us for the afternoon. We played him songs, sang to him and rocked him - it was just like he'd come back to us for the day. At 3.00 pm we had to drive him out to the cemetery for his cremation.

So we laid him in his casket along with Gabe's favorite bunny, which he wanted to give to his brother and some other little keepsakes we wanted him to take with him. My mum had made him a little coral bracelet - a family tradition (my sisters and cousins and I all had them - these things are amazing, these tiny pieces of coral change color if your baby is sick or has a fever). Then we carried him down to the car, leaving the top off the casket so we could see him and speak to him on the drive out. Saying goodbye for the last time was hard, but I felt so much peace in knowing we had looked after him right until the last minute. Perhaps this type of arrangement is not for everyone, but for us it was perfect and so was our last day with Daniel.

- - -

Hi Everyone,

After an amazing thirty or so hours with us, Daniel passed away at 3.00am on Monday morning. He was in my arms and surrounded by those who love him. His Nana, who lives on the other side of Australia, was able to make it to be with him for an hour or so before he died, and it felt as though he held on just to meet her.

I can't begin to explain what the past few days has been like for us. Daniel's birth was the most amazing experience of my life. After much research and soul searching, we chose to deliver Daniel at home - a decision I will thank God for forever.

Daniel entered the world surrounded by Paul, Gabe and I and our two wonderful midwives. The only immediate assistance he needed was a little oxygen to get him going. Paul and I lay awake with him all night just looking at his perfect little face and body - it blew us away how amazing he was.

For the next thirty hours we lived in this little cocoon of love and the outside world seemed a very long way away. Gabe spent every second talking to his little brother and telling him about all the things they would do together. Daniel was so alert and aware and able to let us know exactly what he needed and when. He drank my milk from a small syringe and tried hard to suckle at my breast. He also let us know in no uncertain terms when he needed to be changed, or if he felt too cold or hot.

There's so much more I could say about Daniel and what he gave us in the short time he was here, but there are no words to describe how precious

every second of his life was. I can only echo the words of so many other parents on this site and say that nothing could make me trade even one second of my time with this incredible little boy. I would do it all again a million times over.


- - -

Update 7-7-07

Hi All,

Can hardly believe I am writing this, but Daniel arrived (quite out of the blue) at 6.50pm on Saturday 7/7/07. After a beautiful 7 and a bit hour labour, he popped out weighing just under 2kg (4 point something lbs), measuring 41cm and with a 31cm head.

He is tiny and so beautiful. His heart is doing fine at this stage and he is currently sleeping in daddy's arms on our couch while I send the news.

Apart from the tiny tag on his pinky which looks more like a little bubble of skin, the only visible sign of his condition is an open section in his skull, though there is a thick membrane covering and it is dry and clean (experience with this anyone?) and a slightly large nose (can't make up our minds if this is a T13 manifestation or just the fact that Dad too has a huge hooter!).

Gabe was completely involved in the birth - I labored in water and he even got his goggles and togs (bathing costume) on and swam around with me for the first part of my labour. He was a tremendous big brother - constantly encouraging me and SO elated when Daniel arrived.

Honestly, I am so thankful to God for this precious gift which could not have been delivered to us in a more beautiful way.

Please keep our little one in your prayers as his breathing is a little labored and we anticipate some challenges in the days to come. Oh - he also has a cleft palate but is drinking my expressed milk from a syringe and trying hard to suckle from the breast.

Sorry to go on - still elated, but fading fast.
Thanks and love to all of you, my second family all over the world.

Love and God Bless.
Kylie
shefs@aapt.net.au

- - - - 
Update 6-14-07

G'day Everyone. Thought I would send an update on Daniel's progress following my ultrasound yesterday.

First, a word on my pregnancy care. I have been absolutely blessed to have been cared for by compassionate and understanding professionals ever since Daniel's markers were first detected. My main carer is my homebirth midwife who has been just brilliant and has provided me with the type of emotional support that you'd usually expect only from family. My ultrasounds have all been conducted by two female obstetricians at the local public hospital, and they are easily the most understanding and empathetic of
the medical professionals I've met. My previous experiences with doctors and hospital staff have been largely negative, and it's been really great to find that compassion and common decency have not gone entirely out the window.

Anyway, on to this little boy of ours. I was 33 weeks + 3 days yesterday and the ultrasound revealed some interesting developments. The disproportion in Daniel's heart is even less significant that previously thought - the left side remains slightly smaller, but my OBs felt that this would not be life-threatening in the short-term. They confirmed that the kidneys still appear echogenic, but again, not to the extent they did previously. Daniel's brain is missing part of the cerebellum vermis, but all other parts, as far as they can tell, are present and well developed.

The big surprise was his face. None of the features noted at my original ultrasound are present. His eyes are not overly wide-set (hypertelorism) nor is his chin badly receding (micrognathia). We were also able to confirm no cleft lip or palate. Daniel's most prominent facial features are his cheeks which are really, really chubby! We were also able to clearly see the extra digit on one
hand - very cute.

So, what does all this mean? I really don't know. One of my OBs reminded us that despite everything looking pretty good at this stage, Daniel is 'genetically programmed not to live'. I know she was concerned that we would get over-excited about what we were seeing and go into denial, so I appreciated her honesty. Still, I can't help feeling even more positive now that Daniel will make it to term and that we will have him at least for a little while, maybe even longer (then again, being the eternal optimist, I probably would have believed that regardless of what the ultrasound showed!).

I want to say thanks again to all who share their stories here, especially to those who have said goodbye to their
beautiful babes recently, and to the other prenatal diagnosis families who are still hanging in there. Your
strength, hope and faith is a constant inspiration to me, and you're in my thoughts and prayers always.

I'll forward the ultrasound stills in the next day or so, so you can check out our boy's adorable chubby cheeks!

Love to all.
Kylie, Paul, Gabe & Daniel
xxx

- - -

5-17-07

Hi All,

My husband Paul and I are expecting our second son Daniel on July 29 this year. Our first son Gabriel (Gabe) is six and eagerly awaiting his little brother's arrival.

Daniel's condition was first detected back in March at my routine 19-week utrasound. I had refused all early screening, so this was the first type of test we underwent.

The initial ultrasound revealed five markers: a 'strawberry-shaped' skull, a possibly receding jaw, some disproportion in the chambers of the heart, echogenic kidneys and an absence in the back of the brain. The sonographer and consulting obstetrician both advised that Daniel most likely had a chromosomal abnormality which was 'not compatible with life' and that this could only be confirmed via amniocentesis.

Undergoing amnio was a really difficult decision for me - I'd heard and read so much about healthy babies being miscarried after the procedure and it wasn't something I thought I'd ever consent too. But we felt we needed all the available information on Daniel's condition, so went ahead just a few days later.

The amnio confirmed that Daniel is full Trisomy13.

Since that first tough couple of weeks between detection and diagnosis, things have really improved. We have surrounded ourselves with positive, encouraging people who support our decision to keep and love Daniel for as long as we can and help us every day to celebrate my pregnancy and Daniel's life.

A couple of additional manifestations of T13 have been found since the initial ultrasound, including an extra digit on one hand and possible 'hypertelorism' which means wide-set eyes. On a brighter note, Daniel's left heart which originally looked hypoplastic is not nearly as small as they first thought, though I'm not sure what this will mean in the big scheme of things.

No one hopes for an ill or disabled child, and certainly not for one who according to doctors will most likely die. But I know all the parents on this site will understand me when I say that I would not trade Daniel for the world's healthiest baby and I feel so blessed to be carrying him and can't wait to meet him.

Thanks to all who've posted here, as your stories have given me so much hope and inspiration.

Love to all.

Kylie Sheffield
shefs@aapt.net.au
Brother: Gabriel