Mothering Caroline Grace

learning how to be the mom of an angel


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Decisions Made

With Caroline, we had to make a lot of difficult decisions, often when there were many bad options and no good options.  Facing a rare trisomy diagnosis is terrifying, and I have no judgement for anyone in the position that we were in.  The decisions that you make are made out of love and the best decisions for your individual family.

Gracefully, as we made decisions, they turned out to be the right ones for us.

One big decision was delivery.  Once Caroline approached term and had a shot at survival, I debated whether or not we should deliver her vaginally or have a c-section.  My OB was willing to do whatever we wanted, despite our MFM’s recommendation that a c-section wasn’t worth the risk for a child that is not going to live.  My OB’s flexibility was kind but lacked guidance – for weeks I went back and forth about it.  When you are facing something like this, you wish that doctors could tell you what you should do, but in the end, they have no idea either.  There are no guarantees.  It is your decision to make.

There were very few upsides and many downsides.  I made so many pros and cons lists, with cons dominating each side.  With a vaginal delivery, there was less risk to me and future children.  I would be able to hold Caroline right away and would not be drugged up for my time with her (I planned to go med-free, partially for this reason).  She would get the benefits to her lungs of squeezing down the birth canal.  The downside was that vaginal delivery raised the risk of stillbirth – Trisomy 13 babies are sometimes so fragile that they do not survive vaginal delivery.  On the other hand, a c-section gave Caroline a better chance of being born alive.  However, I would be medicated during delivery and if she only lived for a few minutes, I would never be able to hold her because they would still be sewing me up.

These are the hard realities that bounced around my thoughts in that 3rd trimester.  Either decision was likely a lose.  The advice that I got most often was to think about what I would regret later, but either way, regrets were a possibility.

We decided in the end to stick to our original plan and had a vaginal delivery without monitoring.  We decided to take an emergency c-section off the table.  I did not want to know if Caroline’s heart had stopped during labor so that I could continue laboring with a little bit of hope.  I had a picture of Caroline’s heartbeat trace in a frame on the tray in the delivery room, and it helped me to think positively that she would be alive when she was born.  It was next to the picture of our cats, so that she could meet them if she never came home with us.

Again, gracefully, we made the right decision for us.  Caroline was born with eyes wide open and crying, even though the neonatologist had thought that she wouldn’t have the strength to cry.  Thankfully, she was alive and doing very well!  We took her home a few days later, and she spent most of her life at home on hospice, cuddling with her family, feeling the sunshine, and being kissed over and over and over.  She is my miracle baby who overcame all the odds and gave me the best 58 days of my life.  She is my favorite person and we fought hard for her to have the best quality of life that she could.  I thank God every day for my time with her and that she did not suffer.

No regrets.

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A Little about Trisomy 13

My daughter was born with Trisomy 13, a rare condition also known as Patau Syndrome.  There are many statistics that float around the internet and between doctors regarding the incidence, but one is that it occurs 1 in 16,000 live births.

Trisomy 13 is an extra copy of the 13th chromosome.  We were told that there was nothing we did to cause it or could have done to prevent it.  It happens in a similar way to Down Syndrome, which is an extra copy of the 21st chromosome.  However, the developmental problems and birth defects are more severe with Trisomy 13.  At every OB appointment, I got nervous as he searched for her heartbeat – we were told that she could pass at any time.  My husband always came with me to my appointments, and when they became more frequent at the end of my pregnancy I told him he didn’t need to always come with me.  He replied that he didn’t want me to be alone if my OB couldn’t find Caroline’s heartbeat.

Caroline had most of the common characteristics of children with Trisomy 13; she had a severe heart defect, cleft lip and palate, and an extra pinky on each hand.  Something that I believe helped her to survive as long as she did was that her brain was structurally normal, while many children with Trisomy 13 have a condition called holoprosencephaly.

Despite all of her medical problems, Caroline was the sweetest, happiest child.  She was comfortable and in our arms for 58 amazing days.  We did everything we could to give her the best quality of life that we could while she was with us.  Miss Caroline is terribly missed and I am so grateful for the time we had with her.

Here is a link to more information about Trisomy 13:

http://www.nlm.nih.gov/medlineplus/ency/article/001660.htm