Jenna and Dan went to a prenatal ultrasound where doctors discovered their daughter Ava had Micronancia, or a small recessed chin. Upon further testing, they found their daughter would be born with Pierre Robin Sequence or PRS. PRS was something Jenna and Dan were already familiar with.  Dan was also born with the same condition.  “It wasn’t until I googled PRS to get the gist of what we were actually dealing with that I was able to come to terms with it,” Jenna said.

Potential Difficulties with PRS

Jenna’s doctors wanted to do an amniocentesis to confirm the diagnosis and see if they could gain any more information.  “After asking them several times what we were going to do with this information and not really getting a straight answer, they finally admitted that maybe we would choose to discontinue the pregnancy depending on the results,” Dan said.  Seeing as Dan has this condition, and he is just fine, they chose to continue with the pregnancy.

Dan and Jenna needed to prepare for Ava’s potential difficulties. PRS includes a recessed chin, a recessed tongue, and a cleft palate.  Those things together can cause breathing and feeding difficulties.  Sometimes when these babies are born they need a tracheotomy.  Others require jaw distraction surgery to bring the jaw forward.

Past, Present, and Future Challenges

Jenna prepared herself for issues before Ava’s delivery day.  When Dan was born, he was blue and not breathing because he swallowed his tongue.  So Jenna was ready in case something like this happened.  “When she came out crying, I was overjoyed and relieved, and had happy tears,” Jenna said.  Ava spent over a month in the NICU because she struggled to gain weight and breathe easily.

At a month old, she was only 5 lbs 12 oz and looked really sick.  Doctors decided the best thing for her would be a tongue-lip adhesion surgery.  The bottom of her tongue is sewed inside her lower lip.  This prevents her tongue from blocking her airway.  Ava spent two weeks in the hospital recovering from that surgery.  That experience was difficult for Jenna to witness because her baby was so small and helpless.

Ava recently had surgery to remove the tongue-lip adhesion and she also has a cleft lip/palate repair surgery coming up.  As she gets older, they will need to think about things such as medically necessary braces and speech therapy.

Since Dan has PRS, he knows some of the challenges Ava will face as she gets older.  He always wanted his children to have an easier life than he did with his disorder.  Now that Ava has the same condition, he is determined to help her overcome the same hurdles he faced.

Baby with PRS Brings Joy like Any Other Baby

Ava has an infectious smile.  She likes to laugh a lot which reminds Jenna to not dwell on the negative aspects of life.  Even though Ava has PRS, she is present.  She isn’t thinking about the hard things she did a week ago.  “There’s a lot of strength and joy in that, and I feel like if she can handle all this, I have to be strong for her,” Jenna said.

Ava’s diagnosis is new to Jenna’s family.  For a while, they were nervous to even hold her because they saw her as this fragile little baby.  Dan is impressed with how they have stepped up to show their love and support even if they didn’t know what to do at the time.  This experience obviously isn’t new to Dan’s family and they have been there to offer advice and support with whatever Jenna and Dan need.

Words of Advice: Be Supportive of Each Other

A PRS diagnosis means you will face challenges you didn’t expect.  Jenna was heartbroken over not being able to breastfeed Ava.  It’s something she wanted to do as a mother.  In moments like these, “Be as supportive of a spouse as you can,” Dan said.  Chances are, you will struggle at different times over different things and that is okay.  Although life with Ava is hard, it is better than they ever imagined.

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