Augustinas Berankis – Trisomy 13

“He has taught us so much already! We are blessed to have Augustinas in our family.”

When my pregnancy reached eighteen weeks, we had an ultrasound that resulted in Patau syndrome as my son’s diagnosis. I was told that there was a huge possibility of miscarriage. Our doctor of genetics let me know that the best option would be to terminate the pregnancy. However, I knew from the very beginning that I would never terminate my pregnancy no matter what happened; it was God who gave me this precious life, therefore it was God who would terminate it at the right time. I had to sign a document that even though I knew the diagnosis of T13, I chose to continue carrying my child.

Even though I was also told about the sad statistics of the born children with T13, somehow in my heart I felt that there was a very strong baby growing in my womb. I felt his movements very early and they were quite strong and I felt them very often during the day and night. Days and weeks went by and on the ninth of July, I felt that the baby wanted to see this world. I gave birth at 2 o'clock in the morning on July 10, 2020, (total of 38 weeks and 4 days).

The baby was born crying and his Apgar scale showed a grade of 9-10. He had a cleft lip, defect of palate, extra fingers on both hands, dysplasia and no hearing. The only major problem of the baby was constipation of meconium, which he managed after three enemas. After one month in the hospital we came home.

When he was about two and a half months old, he was diagnosed with epilepsy, which is currently managed with the drug VIGABATRIN. On the 14th of January he had cleft lip surgery. His palate surgery is expected to be at one and a half years old. On the 27th of January he was also diagnosed with glaucoma and the doctor prescribed some gel drops into the eyes. We will see the eye doctor after two weeks and determine what kind of cure will be needed further. In a month we will see our ear doctor again to see if his hearing is still the same.

Augustinas is still able to drink my breastmilk from a bottle. Today is the 28th of January 2021, and Augustinas already has two teeth. As he has successfully recovered from cleft lip surgery, I will try today to give him some solid food, banana or steamed potato.

Our Augustine is so loved by his two older brothers (Adomas nine years old and Saulius five years old). He has taught us so much already! We are blessed to have Augustinas in our family. I just pray to God every day that we would learn how to truly love and cherish our children from all our hearts, mind and soul.

Updated August 2021

It is great to update Augustinas’ story. Since January of 2021 our strong guy has already had two surgeries. As medical eye drops did not cure glaucoma, the doctors performed surgeries for both eyes and the results were very good. Currently we are periodically visiting our eye doctor, who keeps track of the eye pressure and overall eyes status. Also, Augustinas had his hearing checked. The doctors concluded that he cannot hear at all. Therefore, hearing aids were prescribed. Now Augustinas is always with hearing aids (except nights) and it seems to have positive results. Doctors think that hearing aids will be enough and we won’t need hearing implants.

In May of 2021 Augustinas started his therapies, which made him much stronger. Augustinas really enjoys “Baby spa” – time in the pool. He has even started diving! Nonetheless, his epilepsy has also activated. But our neurologist increased our medicine (Vigabatrin) and it seems that epilepsy is currently under control.

On 10th of July of 2021 Augustinas has celebrated his first birthday. It was quite a celebration – celebrating a miracle, which we can see everyday 🙂

It is great to announce that Augustinas had opportunity to see the Baltic sea during the fist week of August of 2021. It was the first trip of Augustinas, which he handled really well. Augustinas spent a lot of time in the fresh iodine filled air, slept and had his meals at the beach. The whole family had a really good time and rest. We went to the performance of dolphins, during which Augustinas was sleeping 🙂 I would really like to attend dolphin therapy with Augustinas, however, as I found out, we will have this opportunity only in 2023 the earliest. Augustinas and his family are invited to the camp of families with children with disabilities on 21-22nd days of August. It will be really great to meet all those families and children 🙂 We are greatly thankful to the organizers and sponsors of “Ray of Hope” Facebook group!

Now we are starting to prepare for the cleft palate surgery. We will meet the doctors in September, the surgery is planned in January of 2022. During the surgery his eye tear canals should be fixed as well.

We are so happy that Augustinas is part of our family. His brothers love him so much! Our point of view has changed and we will never be the same again. Lord, bless our dear Augustinas and all other children with trisomies, as well as their families, care-givers, and doctors!

Written by: Aurelija Berankiene, Augustinas’s mom