Lacey Caldwell

First post: Apr 27, 2018 Latest post: Sep 18, 2018
Welcome to Baby Lacey Caldwell’s updates website. We are using this site to keep family and friends updated in one place.

At our ultrasound, on March 27th, James and I found out that our baby girl has several medical concerns. Lacey is only about half the weight she should be at this time along, her long bones are shorter than they should be (this could be because she is small but we don’t know for sure), she has a cleft lip/upper palate and there is a hole in the wall between 2 chambers for the heart. I also started blood work that would screen her chromosome material, giving information on big things. We chose to wait until she arrives for more specific testing, to avoid unnecessary risks to her.

The result of chromosome testing showed Lacey has a significant loss of genetic material on the first chromosome, which is an extremely rare medical condition.

Our appointment on April 13th was a positive one. We met with a pediatric cardiologist and a genetic counselor. The pediatric cardiologist was very positive about what he was seeing. The hole in her heart is in a place where it could heal on its own before she is born. She will be monitored until she is 3 months old and if the heart hasn’t repaired on its own Lacey will need surgery.

The genetic counselor was only able to share a case report from a similar medical condition, as loss of genetic material of the first chromosome is so rare. This case is similar in physical abnormalities and also in the location and amount of genetic material missing from the first chromosome. This study outlined other possible medical concerns such as intellectual disabilities, low muscle tone and ear abnormalities.

On a positive note, we learned Lacey is proportional in size. Her whole body is delayed in growth by about 2 weeks.

Several doctors have told us we simply won’t have specific answers to her medical condition until our sweet Lacey makes her grand entrance at the end of June.

We have appreciated all thoughts, prayers and support during this time. We have realized how much we are loved and this has made a huge difference in what has been a challenging time. We will update as we can and as quickly as we are able to process the information we are given. 

Psalm 139: 13-16
You formed my inmost being; you knit me in my mother’s womb.
I praise you, because I am wonderfully made; wonderful are your works! My very self you know.
My bones are not hidden from you, when I was being made in secret, fashioned in the depths of the earth.
Your eyes saw me unformed; in your book all are written down; my days were shaped, before one came to be.

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