Aline’s Story

Let me start introducing myself… My name is Aline, I’m a Brazilian mom, wife, and physician, who moved to USA 3 years ago after my husband received an invitation for a position as professor in a medical school in Texas (he is also a physician). Our lives changed for the first time when we arrived here as my life switched from a full time worker to be a stay-at-home mom to my son who was 4 years old, whom at that time couldn’t speak English at all. We did well, and after almost 1 year here, we decided it was time to have another child. So we planned, we dreamt of, we start trying to get pregnant and after 4 months the two lines in a stick came as a huge blessing! Yes! We were pregnant!! Hooray!

Pregnancy went smoothly (yes, I felt a little sick in the first 13 weeks and had some heartburn, but who doesn’t?) until our ultrasound with 20 weeks. I had a kidney stone at 19 weeks and went to emergency room. I did an obstetric ultrasound that came back normal but since I was an old mom (38 years old at that time) my ob-gyn referred me to a high-risk center. I did another one and baby’s kidney showed something different… a dilatation… but nothing more than that. Baby was perfect. Remember that I told you that I am a physician? I checked the entire exam when the technician was doing that…5 fingers in each hand, nasal bone present, nuchal thickness ok, no heart defect… Yes, they were right. The baby was perfect. And then we decided that we didn’t need the genetic testing… the ultrasound was normal and in those circumstances we had a chance of 98% of ruling out any kind of genetic malformation/condition.

Pregnancy continues and baby was doing great. At that time we already knew that it was a baby boy. We struggled a little bit to choose a name… we wanted a name that could fit good both in Portuguese and English. After a while we named him Daniel! So we prepared our house, hearts, family… everything for Daniel’s debut. We organized our Brazilian family to come to USA to help us. Everything was set up but Daniel had his own schedule. He came 2 weeks earlier, in a sunny Wednesday. I had to call a friend to watch Gabriel (my oldest one) and my husband had to get out early from his clinic.

Daniel was born at 37 weeks. It was a c-section because I had a previous one. My ob-gyn was on call so she did my surgery and at 10:04 pm I had my little baby on my arms. But… as soon as I saw him I knew it that something was wrong. I saw too many typical babies during my med school years that I was able to tell at first sight that he had Down syndrome.  Then I tried to ignore my physician’s thoughts and change it to mom’s mode and thought “he is just a little ugly because he looks like his grandfather”.  After some days, my husband told me that he had the same feelings and thoughts but neither of us had courage at that moment to share those.

Next day the pediatrician comes in, checks the baby and starts a conversation asking me if I did genetic testing, ultrasounds… I knew what she was thinking… I did that so many times in my life that I knew it that she was preparing me for some “bad news”, but I was in “mom’s mode” and I couldn’t hear it… when she started to talk about some findings on Daniel exam I just could reply that he was able to breastfeed and, WTH, I also have a crease! But deep inside my heart, I knew it. I didn’t need a chromosomal analysis. I knew it at the first sigh that my dreamt baby wasn’t the one that I dreamt of. When my husband came back to hospital and the friend that was with me left, I cried for the first time. I couldn’t hold myself. I hold Daniel against my chest, and I was the one that cried as a baby. I was so scared of how things would go… I was so guilty for not doing the damm blood test, I was afraid my husband could say that this was my fault because I was too old to have one more kid… I was so overwhelmed with so much fear that I could just ask to my husband “ and now????” and then he remembered me why I married him, he cried with me and replied “if it is true, that Daniel has Down syndrome, we will do our best so he will be happy, no matter what.

Then we started our walk as a special needs kid parents. Daniel did his tests at hospital and our job was taking care of him. I kept crying all the time for the first 10 days. I grieved.  I just ate and slept because I had to. I prayed for God, Mary, all the saints that I knew it for the pediatrician diagnostic to be wrong. But then I realized that maybe she wasn’t wrong… and then I asked to God to make me strong to cope and give me wisdom to do my best to my son.

I have to tell you that we had some angels in our way… our pediatrician, Dr. Stoerner, and the geneticist, Dr. Northrup. Both are amazing ladies. Both were so lovely, caring and supportive. I remember that Dr. Northrup saw Daniel when he was 6 days old and she got the Fish test result as positive. She gave us the results and my world fell apart at that moment. One more time I held Daniel and sobbed. She asked the resident to get out of the room, came close to us and told me: “you must cry because this is not the baby that you dreamed of…  you can grieve, you must, and that is ok… in some days you will start to see him as he is, and not as a diagnosis, and then you will love him by who he is”. Strong words. Hard to hear, but soooo true.

Long story short… we started to create our support network. Step by step we started to tell our families and friends about Daniel and we had so much love from everybody. And then I discovered GiGi’s playhouse. Daniel was 4 months old at that time and already on early intervention. I remember arriving on a Saturday morning with all our family and met Amy, Sarah, and Belinda. They walked to welcome us. They told me how precious and beautiful Daniel was. They just looked at us as we were: a family.  I didn’t see the “sorry faces” that I saw so many times when I told about Daniel’s extra chromosome. I saw people celebrating Daniel and us because we were there.

After that day, Daniel and I started to be “regulars” in all the babies programs. I could meet so many amazing families there, people who understand completely our feelings, fears… Each little accomplishment is celebrated there. Daniel tried to crawl for the first time at GiGi’s and another mom almost cried along with me.

GiGi’s is a place of love, acceptance and empowerment. I feel like we have our little “family” there… it’s a place where if you cry nobody will feel pitiful… someone probably will cry with you. It’s a place to share… dreams, fears, expectations, disappointments, and any kind of feelings, discoveries. It’s a place to give and receive. Love, knowledge, patience…

It’s not an easy journey. Sometimes it’s overwhelming. But I think that with support and faith we can make it. Together. I’m sure that after Daniel I am a better person, a better mom to Gabriel, and probably, a better physician.