Brielle turned 4 yesterday! We are so thankful or her life and grateful that God gave her to us. She is a blessing in our lives! It was a bumpy, difficult, and scary road for us to have her though.
It all began with the life of our son Barron. My pregnancy with Barron was smooth and easy. He was a full term- 40 week pregnancy too. It was a regular birth for Barron (meaning no C-section). However, his life was short lived. He passed away at 8 weeks of life because of Spinal Muscle Atrophy I (SMA I). We didn’t know anything was even wrong with him until he stopped eating at 2 weeks old. He appeared to be a normal, healthy baby. Little did we know he had a genetic disorder that would cause all his muscles to fail very quickly.
After he passed we learned that we may not be able to have healthy babies at all. We had a 25% chance of each future child having SMA I. The average lifespan of a baby diagnosed with SMA I is 5 months.The risk was too high for us to bear the birth and death of another child. We found out that new fertility procedures existed where they were able to test for the disease before the embryo was implanted. This is known as IVF with PGD testing (In Vitro Fertilization with Preimplantation genetic diagnosis) .We made the personal decision to go this route. Our other option was to get pregnant and then do an amino Test at 8 weeks to see if the baby had SMA. If the baby did in fact have the disease, we could abort. I did not want to do this. I knew I couldn’t do this for myself personally. Instead we did IVF, which is incredibly costly and stressful (just ask any woman who has ever gone through it).
I was quite hopeful and optimistic during our first round of IVF. We had easily gotten pregnant with Barron, so we knew getting pregnant wasn’t the issue. It was having a baby that would survive that was our issue. Our first round of IVF defied statistical odds. We even got a personal call from Genesis Genetics explaining that we are only one of three other cases that they processed that had experienced these horrible results. 7 our of 9 of our embryos had full blown SMA I. Meaning that if I were to become pregnant with these embryos each one would certainly die in infancy. Horrible. Of the remaining 2 embryos only one survived for implantation. It was implanted. I initially had positive pregnancy results. And then I had bleeding and I was no longer pregnant.
Because we had no more embryos we had to start the entire IVF process over again. The process is expensive (tens of thousands of dollars each time), painful, and difficult. But, WE wanted a child more than anything. In the meantime we had become licensed foster parents and had a 7 week old baby girl placed with us. To be honest she was probably one of the best blessings God gave me during that difficult time. Having her to care for, distracted me from my own problems and struggles in wanting to have a family. Of course we wanted to adopt her, but that was up to God (and the court system as well). In the meantime, I spent my days caring for our foster daughter we nicknamed “Little Bit”. We loved her as though she were our own.
The second round of IVF worked and I was pregnant! We were over the moon, but tentative of course with everything that had happened. I started getting very ill around 6-7 weeks pregnant. Not just morning sickness, but quite ill. It turned out that I was having gall bladder issues. I had to be hospitalized for several days and then over a week on two separate occasions. It was tough because I was only allowed a clear liquid diet in the hospital. Not especially ideal when you are pregnant. Things progressively got worse, but they were not able to do surgery until I was in my second trimester. My gall bladder was causing stones that blocked passage to my liver. My liver began having problems. I was in bad shape, but I didn’t want to risk surgery to the baby until necessary. At 14 weeks pregnant I did have surgery and my gall bladder was removed. I spent the following 2 weeks recovering in bed on bedrest. Did I mention I had a foster baby at that time? Yes, she stayed with me that entire time. Justin was working, so I needed to take care of “Little Bit”. A number of people suggested that perhaps we give “Little Bit” back to the state and have her placed in another home. To me, that was unheard of. I looked at her as my own child. There was no way I was giving her to anyone. She was an easy baby and was not crawling or even rolling yet, so we spent many days in bed simply cuddling, reading books, eating, and watching TV. She was very good company. God knew exactly what I needed. I don’t think people would have guessed that a foster mom would NEED a foster baby; but I sure did.
After recovering from the gall bladder operation I tried to get back to some normal activities. I was on the board of directors for Miracles in Action.http://www.miraclesinaction.org A nonprofit that helps the poorest of poor in rural Guatemala. We do things like build schools and water projects in very rural Guatemala where people live in dirt floor huts and have no running water. The home office was based in Naples, FL. At that time we were living in Fort Myers, about 45 minutes to Naples. One day, I went to do some volunteer office work for Miracles in Action in Naples. While I was there (with “Little Bit” in tow) I began bleeding. Heavily. Penny (the director of Miracles in Action) wanted to call 911. I said, no, it will be quicker if I drive myself to the ER right now. Which I did. When I arrived I was informed that I was having a miscarriage and was handed some towels in the waiting room for the bleeding. (I will not mention the name of the hospital, because I don’t think it was nice of them to allow a 17 week pregnant woman to bleed out in the waiting room). When I finally was taken back to a room they said that there was not much they could do. They would bring in the ultrasound soon, but it did not look good. Especially with the amount of bleeding. It felt like a lifetime waiting, not knowing. I called my husband and I was not calm. I am not a person who looses it, but I was that particular day in those particular circumstances. The only thing I could think to do was pray. I prayed…no BEGGED God to keep this child in my womb and to allow her to grow and to be healthy. I asked him to make everything ok. I didn’t care who heard me. I was praying out loud, clear for the world to hear.
Finally the doctor came in for the exam. Of course, his pep talk was something along the lines of “…well we can’t do much about these things early in a pregnancy. You need to be further along, more like 25 weeks before anything can be done to stop what is happening”. Then a miracle happened. No joke. A simple exam and he said in a very surpised manner “well, your cervix has closed”. He then did the ultrasound and there was a strong heartbeat. There were no problems shown either. The doctor couldn’t explain why it had all happened and simply labeled the case “a threatened miscarriage”.
After being released from the ER, I called my IVF doctor (Dr. Pabon), who I trust, adore, and respect. I called his cell phone and he called me back in less than 5 minutes. He is probably my favorite doctor in the entire world. He said, to be on the safe side, why don’t you do bed rest for the next 2 weeks. And so I did. Once again “Little Bit” and I spent some more time bonding in bed. She was the best baby ever! So easy and sweet. She just wanted to be near me and to be held. Fed too, as she became a little chunky baby in our care.
I took it VERY easy the remainder of the pregnancy. I was too scared to do much of anything. I didn’t even want to have a bumpy car ride! No exercise, just lots of rest and downtime. The most I ventured out was to take “Little Bit” to our Mommy and Me music time classes. I met some other fabulous Moms in that class who are some of my dearest friends still today!
About a month before my due date it was found that the baby was breech, so we needed to schedule a C-section. I had not previously had a C-section, but I was relieved at the same time. The birth with my son Barron, although it had been “regular” was a bit traumatic. He had the cord around his neck and was completely blue when born. I didn’t want to have that experience again.
Brielle Faith Battles was born on January 12, 2012. She was a healthy, beautiful baby girl! After all we had been through, she was such a blessing! She was welcomed to the world by lots of family eager to meet her including her foster sister “Little Bit”.
Brielle has been a sweet girl, with the nicest disposition. She is good to her little brothers too. She has a caregiver personality, much like her Mommy. She is smart, creative, and she loves to swim and sing (although we aren’t sure if there is real talent there yet). She is definitely a Mummy’s girl. If it were up to her, she would stay with me all day everyday and never leave my side. Forget about sleepovers anywhere for now! She wouldn’t hear of it!
Here she is at age 1:
At age 2:
Brielle age 3:
Brielle age 4 (Photo taken yesterday on her actual birthday):
I thank God every day for the blessing of Brielle! She is precious, sweet, and has made my life so wonderful!!
I admire you so much Magdalena. There are not many people who have such strength and courage. Thank you for sharing your story.
Thank you Heidi, I sincerely appreciate your kind words.
So sweet 🙂
Hi there. Did you end up adopting little bit? My mom is 63 and has a different form of sma that doesn’t strike you until you are an adult, she is currently very sick.
Thank you for your reply. I am so sorry to hear about your Mother. Yes, with other forms of SMA people can live longer, fuller lives. God has blessed your Mother with a long life considering she has SMA! However, I know how awful this disease can be, so I will be praying for your Mom.
We were not able to adopt our foster daughter. Her story is a happy one though in that her parent’s have her and things are going well for all of them. It was just a bump in their road of life as well. We did have her for 15 months and we were so blessed having her for that time. I hear about her from her Father, who keeps in contact when he can. I have even visited their home since she went back with them. Our Foster situation is unlike many others in that we have a good relationship with the biological parents and communications have continued.