Baby Alyssa’s fight against Trisomy 18

From Annette:

In August 2021, my husband and I were excited to find out we were gonna be having our third child.

We are blessed with two boys already (ages 9 & 6.) that are thrilled for their big brother roles.

As we later learned, we would be welcoming a sweet girl, Cheyenne Alyssa, in April of 2022.

They found I had a subchorionic hemorrhage earlier on in my pregnancy but that wasn't too much concern to them at the time.

After sharing our expectant news with family and loved ones, we later learned at the 20 week anatomy scan that there were abnormalities and concerns of which had my OB send me to the Maternal Fetal Specialist to further evaluate.

The things they saw that caused the referral were:

She was and is very small compared to where she should measure at. At the time she was in the less than 4th percentile.

She had cyst on the right side of her brain.

Lack of forearm development on both sides.

Her hands are "clubbed" stuck facing inward and her fingers are not all separated as 5 individual on each hand.

Omphalocele - this is her bowels that are on the outside connected by her belly button and not inside where they should be.

Intestinal hyperechogenicity.

Polyphydramnios - excessive amniotic fluid.

We knew our love was gonna remain the same no matter the future outcome for our little girl.

We had two back to back appointments at the MFS on the 13th & 14th of December, during which the decision was made to follow through with amniocentesis. This happened on the morning of my husband's birthday of all days. On the evening of December 20th, I received a call from the Specialist informing me the preliminary results came back positive for Trisomy 18. Further testing and blood work came back days later confirming this.

Trisomy 18 is a rare genetic disorder causing a third copy of the 18th chromosome.

This comes with a fatal diagnosis.

Most babies don't make it, whether they pass as a miscarriage or stillbirth.

Come to find out, that subchronic hemmorage I was diagnosed with in the beginning was where my body had "attempted" a miscarriage. My baby girl however was and is a fighter.

It did not take her. The Lord had further plans.

Most babies that do make it to delivery alive, don't come with a promising length of survival. This could be hours, days, weeks, months and very rarely do they make it to their 1st birthday.

I pray she makes it and for all the time we can get with her.

At the next specialist appointment on January 11th, they did a fetal echocardiogram and found several heart issues.

We are scheduled to see heart specialist for further diagnosis and discussions on if we can seek treatment for them and the surgical options if so. As of today January 28th,

Her size is now 1 pound and almost two ounces and they believe she's growth restricted and possibly at her max growth and weight. Our prayer is her to gain more though.

I was also personally diagnosed with a swollen liver (or gallbladder - my ob isn't sure which personally) as a result of preeclampsia.

This has caused a constant pain directly under my right ribs and sometimes penetrating thru to my back as well. I am less concerned with myself in any of this, I fight for Alyssa whose fighting with all she has.

At my routine OB appointment on the 27th of January, I was to have my normal Glucose testing. I failed this testing with high blood sugar readings and low iron. I'm now believed to have gestational diabetes and go for further testing on the 28th. We have another MFS appt. On the 29th following this and the 30th at the heart specialist. They want to all see us and talk together on opinions but are looking to bedrest me to try to get us to the 36 week mark. This would be March 25th. The bad news to that is they believe it may be best to do so as a hospital bedrest, to be able to constantly monitor our health and make split moment decisions if her heart rate drops, my blood pressure spikes too high or other issues arise.

Having other kids at home, this doesn't seem very practical. My husband works in the mornings and logistics to get my kids on the bus for school among many other issues would arise from this. Not to mention, covid has placed such restrictions on things that at most, my visitor during this timeframe of potential weeks is only my husband.

We are praying hard this does not come to be the case and that we are allowed to bedrest at home with our loved ones.

Ultimately, the future remains very unknown still. Thankfully, we know who holds the future and we trust the Lord will see us through.

We haven't purchased anything for her other than an outfit as I felt that was one thing I could buy and pick with love for our little one made of love.

We aren't decorating a nursery and all the fun joy a baby usually entails.

Instead, we are facing making decisions no parent should have to make for their child.

If she fights long enough that we are blessed with time to spend with her here on earth, the NICU stay would be lengthy and several medical surgeries would be in store.

Doctors say, she has no chance of coming home with us. I would love her to fight this and defy this belief ultimately.

Funds would go to take care of any of Alyssa's needs in this journey whatever extent they may end up or to help cover any should we be faced with saying goodbye. It would also help during time off to care for our other kids or spend time with her in the hospital, any of the future that still remains unknown.

Prayers are always appreciated more than anything.