Born Too Early: Meet 23 Weeker Amelia Pearl

During the month of November we contacted some families that had premature babies and posted their amazing stories to create awareness about the March of Dimes Prematurity Awareness Month.

The response was such a success that we decided to continue to post stories that have been sent to us by parents in hopes of getting the word out about the important work that the March of Dimes is doing.

Because our staff writer Shannon and I both have babies that were born at 24 weeks, this cause is VERY dear to our hearts. Prematurity awareness shouldn’t only happen for one month a year, it should be something that everyone know could occur at any time. – Lisa

The next amazing baby we would like to introduce you to is Amelia Pearl. This beautiful little girl was born on June 9th 2006 at only 23 weeks 4 days.

Cora says that the only reason that she can come up with for having Amelia early is the “nurse curse”! On Amelia’s mom Cora gave usis a NICU nurse.

I guess I was destined to have my own preemie. And yes, Amelia was born in the unit that I worked.

At birth, Amelia weighed 665 grams and was just over twelve inches long. Amelia’s NICU stay included the usual micropreemie “issues”. She had a grade 1 IVH (bleeding in the brain) on the left side only. She had to have heart surgery at one week of age to close her PDA. (A PDA is a vessel on the exterior of the heart that normally closes with a newborn baby’s first big cry. Preemies are unable to generate that big cry, and are usually unable to close the vessel on their own. With the PDA open, the body is pumped not fully oxygenated blood, and the lungs are also flooded with extra blood causing even more lung damage.)

Occasionally medication is used to attempt to close the vessel, but the use of that medication was not possible with Amelia, so mom and dad opted for immediate surgery. The PDA surgery saved her life, but also ended up giving her a paralyzed vocal chord.

The remainder of Amelia’s NICU stay had the usual ups and downs. She was intubated and on a vent for 48 days. She always had issues tolerating her food, and mom was constantly on NEC watch (necrotizing enterocolitis…a deadly condition common to micropreemies that involves the intestines perforating and overwhelming sepsis resulting).

She also developed ROP (retinopathy of prematurity), and that has thankfully resolved on its own, although she came very close to requiring surgery.

Amelia was in the NICU for 90 days before coming home. An incredibly short time for a 23 weeker. She was sent home about 7-10 days earlier than the hospital would have sent a preemie home if they had a “normal” family.

I guess that everyone trusted me to be able to take good care of her, and tube feed her if needed. But I never needed to! (And only had to threaten her with the tube once!)

As for lasting effects from prematurity, Cora’s personal feeling is that it is impossible to be born at 23 weeks and NOT have lasting effects from prematurity. One simply can’t be exposed to extrauterine life at that gestation and not be marked for life from it.

Amelia’s effects from her prematurity are less than mom ever imagined possible. She still has reflux, and is on a daily medication for it. All of her developmental milestones were delayed, but have come in their own time. She is currently being reassessed by the local school system to see if she qualifies for any special education, mostly focusing on the area of speech. Her future remains unclear, but given her age and size at birth, future learning issues wouldn’t surprise me at all. Cora says that they are blessed beyond measure, and are so thankful every day for her.

Amelia is an only child right now. She was Cora’s very first pregnancy. They are hoping to have another child, but are very scared that that child could be premature too.

If Cora had one piece of advice for a new preemie mom, it would be this: Savor every moment you get to spend with your child; the good, the bad, all of it. You never know how many days, months, or years you will be granted with your baby, so make memories now. Don’t wait for later, because you never know how much “later” you will be granted.

I asked Cora to describe Amelia in one word and she said “AMAZING”.

To be born at 23 weeks and be where Amelia is today, IS amazing. She is a beautiful child that has come so far in life.

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