Mothering Caroline Grace

learning how to be the mom of an angel


Memory Monday

Caroline’s aunts and uncles on her daddy’s side drove out to visit us for a few days.  They were so excited to meet the niece that they didn’t know they would get the chance to meet.

Caroline is the first girl cousin in the family, and her two cousins were excited to meet her as well.  One asked his mom, “Can’t they just fix her heart?” after being told how Caroline would not be with us for long.  When I heard of this, my heart ached for him and for my family.  I wish it were that simple.

When everyone arrived, they were so thrilled to hold Miss Caroline.  Although they were nervous about her breathing, they all did well with keeping her in a good position on her side.  Her younger boy cousin was shy around her because of her cleft lip and palate, but her older boy cousin held Caroline and said, “I’m so glad we came.”  Caroline’s aunt works in children’s clothing and brought all of the New England sports gear for Caroline that we could not get here.  We dressed her in a Patriots onesie that was of course, pink.  The Patriots were the one team that I really called my own growing up, so it was special for both me and my husband to dress Caroline in her home team’s outfit.  She still kept her girly look with a matching headband.  Caroline was always in style.

This weekend we celebrated a Superbowl win, and I think Caroline was cheering with us, from heaven.  For some reason the Superbowl without her was so hard.  I cried myself to sleep every night this weekend missing her.  We were supposed to see our team win as a family, and I couldn’t shake the thought that she should be wearing another Patriots outfit, one that is much bigger.

I love and miss you, baby.  So much.

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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: