We have detected that JavaScript is currently disabled. CaringBridge is best viewed with JavaScript enabled.

Grace’s Story

Site created on December 8, 2021

Grace’s health journey started at 2 days old. The doctor heard a heart murmur after she was 24 hours old and told us that it should be gone by then. So Grace had her first ECHO to check out her heart. We were told that she had a PDA. A PDA is a duct that is open between the Pulmonary Artery and the Aorta so that the blood bypasses the lungs when the baby is in the womb. Normally that duct closes within the first 24 hours after birth. We were told not to be concerned because they normally close on their own and to follow up in 6-8 weeks. We had a follow-up visit with cardiology when Grace was about 6 weeks old and she was doing good so we were to follow up in 6 months. We ended up in the hospital when Grace was about 8 weeks old. She would not eat and she kept getting sweaty and clammy. It was all related to her PDA that had not closed. Grace needed to get bigger so we kept on fighting with her to eat and make her grow. At 5 months old Grace had a heart cath to close her PDA.

Grace did great after the heart cath for about 3 weeks and then she started vomiting all the time and not wanting to eat again. At this time they placed an NG tube (a tube through the nose to the stomach) so that we could feed her. After some testing, they discovered a Laryngeal Cleft which is an abnormal opening between the airway and the esophagus which food and liquid can pass into the lungs. Shortly after discovering this, we had a G-tube (feeding tube directly into the stomach) placed. Our ENT recommended a temporary injection in that opening to see if it would help keep her from aspirating. Grace has had 3 temporary injections and has had good results from those so it is now time for a permanent procedure to fix the Laryngeal Cleft.

Grace was also diagnosed with a 6p12.3p12.1 genetic deletion which means she is missing 81 genes in her 6th chromosome. This was helpful because it explained her PDA (a PDA is super common for preemies and down syndrome babies but not for healthy full-term babies) and her short stature but it is limited to that. The doctors have a database they can look for similar people with the same deletions and there is no one else alive with similar deletions as her. Please keep us in prayer as we continue on this journey with our precious daughter.

Newest Update

Journal entry by Sarah De Boer — Mar 28, 2024

Thank you for all your thoughts and prayers! Grace was so brave this morning for her scope and probe. 💗

The scope showed evidence of reflux, which is not surprising. The biopsies for that will come back in a week or two.

The probe she will thankfully only have for 24 hours. It will measure reflux and acid and record it on the little machine. The results for that will come back in a couple weeks.

She is mildly annoyed with the tube in her throat and doesn’t like that her voice sounds a little funny. She also was sad that “I can’t smile all the way”💗

Love,

Marc and Sarah and family

Read More of the journal titled "March 28, 2024"

Before…

After…thankfully it’s only 24 hours

Patients and caregivers love hearing from you; add a comment to show your support.

Help Grace Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Grace's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Read More Journal Entries

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser

Support Links

Helpful Requests

Go to Ways to Help