Thursday, November 30, 2017

The story of Teddy

The life and death of my son, born with osteogenesis imperfecta. My son Teddy, properly named Theodore Cassidy, was born on the 9th of June, 2017.  He died peacefully in his father's arms in the early hours of the 10th of June.


Teddy was diagnosed with the most severe type of osteogenesis imperfecta (OI) when I was about 26 weeks pregnant, and we were told that he would have no real chance of survival after birth.  A difficult pregnancy became even harder after learning this.  I was given the option to terminate;  the law allows for termination at any stage of a pregnancy where there is severe mental or physical disability.  To be honest, deciding to carry on was a difficult decision, especially when I saw my baby's many broken and part-healed bones on the scans.  Knowing he would die anyway, and thinking he might be in agony made a very good case for termination.

After several weeks of consideration, I decided to carry on for my own peace of mind;  I felt I would regret making the decision to end his life, and I didn't want that guilt.  I also wanted to meet him and hold him while he was alive.  I still wanted him and loved him, even if he was going to die.

I, the medical team, and Partner all made a very detailed birth plan to accord with my own wishes and to cope with every possible outcome.  We signed what was basically a DNR for Teddy, and we asked that no invasive procedures be performed;  we knew that it would not save him and would only cause more broken bones and pain.  We only asked that Teddy be given pain relief upon birth, and that he not be handled or touched by anyone but his dad and me.  Although we asked if a C section would be an easier birth for him, we were told that he would have to be roughly handled in order to get him out--it would likely be just as traumatic for him as natural birth--as well as a harder recovery for me.
Pregnant woman standing in a garden


I requested the birth pool at the hospital to make Teddy's entry into the world as gentle as possible.  I opted to have pethidine during labor, as it would pass through the placenta, giving him pain relief as well.  My labor was fairly easy and Teddy was born at 11.59 PM, with Partner and one midwife in attendance.  He weighed just 3 pounds and was 13 inches long.  The only outward clues to his condition were his small size, and his arms and legs were shorter than normal, though not by much:  he looked like a little baby doll.

I held and cuddled Teddy in the pool;  he was calm and not distressed at all.  He only blinked a little and snuggled up to me;  he didn't cry.  To me, he was perfect and I loved him with all my heart.  Partner took him once I got out of the pool, and held him skin to skin, covered in a warm towel;  Teddy passed away quietly not long after.  He lived for just about 15 minutes, though his official time of death was one hour and 36 minutes after birth.

As we had planned earlier, the hospital provided us with a cooled mattress pad called a cuddle cot, so that we could keep Teddy with us the rest of the night, and hold him if we wished.  Because he was kept cool, holding him was like holding a sleeping baby:  soft and relaxed.  I washed him and dressed him in a tiny onesie I'd bought, and a knitted matinee jacket and hat I'd made;  I wrapped him in a lacy shawl I'd knitted.  In the cuddle cot, I covered him with the patchwork quilt my mother had made when I was a baby, and which I'd covered Franklin in too.
Close up of a knitted matinee jacket
Two stripey knitted hats
Detail of a knitted lace shawl
The next day, along with Franklin, we went to Martin House hospice to stay for a week with Teddy, using their cuddle cot.  We were able keep him with us the whole time while we arranged for his burial;  we even took him for short walks around the hospice grounds several times.  Being at the hospice meant that we didn't have to worry about the small things like meals and chores or dodging friends and neighbors;  we were able to spend time as a family, loving Teddy for the little time we had with him.


On the day we buried him, we drove him from the hospice back home, to show him  our house and garden and chickens.  After I picked some rose petals to scatter on his grave, we drove on to the burial site.

We buried Teddy one week after he was born, in a wicker basket woven specially for him by a local basketmaker.  He was buried simply and privately, with just his parents and brother in attendance, in a natural cemetary where the forest and meadow meet.  He was buried with things we made for him:  the clothing and shawl I'd made, a necklace with his name made by his dad, and a little wooden airplane Franklin made.  We laid bouquets of wildflowers picked at the hospice.  My beautiful baby looked as though he was only sleeping;  Franklin read him a bedtime story before we lowered his basket and buried him ourselves.  We scattered the rose petals and a handful of wildflower seeds on his grave.


Now that the grief is not so raw, I can safely say that every memory I have of Teddy is a happy one.  I had a positive birth experience with him;  because we had met with hospital staff beforehand and written a very specific plan, my wishes were followed throughout.  My memories of the week we spent with him at the hospice are also happy, even though it was an intensely sad time.  The hospice was a cheerful place, set up for whole families including siblings (Franklin loved it there).  I'm so happy we had him with us for the entire week--I was able to kiss and cuddle him whenever I wished, right up to his burial. 

We have visited his grave every week since we buried him in June, to lay flowers  and to walk the meadow and meditate;  Franklin brings a little story to read at Teddy's grave.  We will always love our sweet baby boy and we're glad we had him, even though it was only for a short time;  I don't regret any of the choices we made.   He will always be a beloved son and brother;  we will never forget him.

If I were to give advice to my past self it would be:  make happy memories, starting right away.  Before birth, talk out loud to your baby, read to your baby--love and be proud of your baby.  You will have memories no matter what, and how much better to have happy memories than only sad ones.
A family portrait with parents, a young boy and a newborn baby