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Carmine and Giulliana's Story
"Not long after the birth of our first child, my husband and I started discussing when would be the right time to start trying for our second..."
We had always said we wanted a big family and we knew we wanted them all close together. So, the clock started ticking as soon as Carmella, who is now three, was born. After much negotiating we decided that we would start trying when she was 6 months old and see what happens. I had always had a feeling I would have issues getting pregnant and unfortunately, I was right. After, about 6 months of trying with no success I begged my doctor to refer me to a fertility specialist. Although, he thought it was unlikely there were any issues he referred me anyway, and lucky for us he did. I was quickly diagnosed with Endometriosis and my husband was found to have a low sperm count....not a great combination if you are looking to have a baby. We ended up trying a few rounds of Intra-Uterine Insemination (IUI), but it seemed like all the signs were pointing in the direction of In-Vitro Fertilization (IVF). This was a big decision for us. We had already been on an emotional roller coaster up to this point, and we knew that the added financial and time commitment would only add to our heartbreak if it didn't work.
After, praying about it A LOT we decided to move forward with the IVF process. After, about a month of shots and constant temperature taking it was finally the day of the egg retrieval. They retrieved 5 eggs from me that day, but only two out of the five fertilized the way they should. We had decided early on in the process that we would not transfer anymore then 2 embryos due to my age so God had given us our best odds. On the day of the embryo transfer I remember saying a prayer asking God for both babies to make it, especially if this was going to be my last pregnancy. I know to some this might sound kind of greedy considering I should be thankful to have even one make it, but I knew that unless I had at least three children I would still always long for more.
God must have heard my plea because after waiting 2 agonizing weeks my husband and I found out we were having twins!!! Some cry out of fear, but we cried out of relief. God had answered my prayer! We quickly started spreading the news about our growing new additions and tried to enjoy every second of this last pregnancy. Although, most of my first trimester was relatively uneventful there were a couple of weeks that I felt like I had been hit with the flu. I ached all over, had no energy and felt just plain exhausted. I mentioned it to both my OB and my fertility doctor but, both just assumed my symptoms were a result of all the changes my body was going through making a home for TWO babies! If only that had been the truth!
I was almost 17 weeks along and had pretty much forgotten about the Quad Screening Test I had completed over a week ago. My OBs office has a "No News is Good News" policy and I just assumed I was in the clear. That was until I got what I thought would be the worst phone call of my life. (Little did I know what the future had in store.) As soon as I saw their number on my screen I knew what they were calling about, and sure enough I was right. With tears already streaming down my face I was told that my Quad test had come back abnormal for Down Syndrome and I needed to go in for an ultrasound with the perinatologist. The nurse tried to assure me that this test is extremely unreliable and that everything would be fine but nothing else she said was sinking in. I immediately called my husband and then called and scheduled the ultrasound.
Four very long days later we finally went in for the ultrasound and some of our worse fears were realized. The minutes seemed like hours as the ultrasound tech carefully took all her necessary measurements. Something about her face and the quietness of the room said things were not okay. She eventually excused herself from the room and returned shortly with the doctor. He quickly took a look for himself and then started explaining what he was seeing. Both babies had a brightness in their bowels (echogenic bowel), and a build-up of fluid surrounding their stomachs (ascites). My son, then called Baby A also had and a pocket of fluid to the right of his right lung (pleural effusion).
My doctor explained to us that it would be extremely unlikely for both babies to have down syndrome, but the only way to confirm a diagnosis was to do an amnio. After weighing the benefits and the risks of the procedure we decided it would be better to find out now, therefore giving us the rest of the pregnancy to educate ourselves and better prepare for the future. Shortly after the amnio, Dr. Harstad, my perinatologist, mentioned that he really thought what he was seeing on ultrasound was a result of some sort of infection. He listed out a few different viruses and said that the genetics counselor would be in touch with the results in about a week.
We waited in agony wondering about the health of our unborn children and after 7 very emotional days we got the first round of results and it was good news, neither baby had Down syndrome. Up until this point we hadn't given much thought to the viruses he had mentioned and had only assumed that a virus was a more treatable condition compared to Downs. After, spending a little time researching the individual viruses it didn't take us long to conclude that CMV was the worst. I remember the feeling in the pit of my stomach when I read, that for most women it is asymptomatic but in some cases women will experience flu like symptoms when they have been exposed.
On February 4th, 2009 I can honestly say I received the worst news of my life. Sitting in a parking lot all alone I was told that both my babies had contracted CMV. There were no treatments available so my options were to continue the pregnancy with little chance of making it to full-term or to terminate the pregnancy. Not liking either option, I was now forced to call my husband with the news. After giving him the news we decided to meet up in a local grocery store parking lot. I crawled into his car and we just held each other and cried.
We spent about 3 hours in that car that day talking through every aspect of this decision we were forced to make. If we went forward with the pregnancy would I even make it full-term? And if I was lucky enough to make it full-term how badly would each baby be affected? Could we take care of two children with severe mental and physical disabilities? How would we afford to provide them the care they would need? Which one of us would quit our job in order to care for them? How would our older child's life be affected? Would our marriage be able to sustain the emotional ups and downs? And that was just option 1, what if we took the other path. Would we ever get pregnant again? What would people say? Would we be judged? And most importantly, would we be able live with ourselves knowing we chose to end a life?
We talked through each of theses questions one by one, and ultimately came to the conclusion that this was God testing our faith. We had always considered ourselves Christians and now God was asking us to prove it to him. And that is just what we did when we decided to carry our babies as long as God would allow. Lucky for us, it didn't take long for God to reassure us he would be along for the journey.
Shortly, after getting home that day while searching online we came across a study that was conducted back in 2005 in Italy showing promising results for an experimental procedure calling for an IV infusion of Hyperimmune Globulin (HIG) that might at the least, decrease the affects of this infection on our babies. Within minutes of finding this study we received a phone call from our perinatologist and he had found the study too. We then reached out to a doctor in Florida who had published an article reviewing this original study, and he recommended we try it.
Within 24 hours we secured the needed dose of HIG at a local hospital, made arrangements for the infusion itself, and finalized the protocol. I was given one infusion and was monitored bi-weekly by ultrasound to assess the progress. At every check-up the echogenic bowel got lighter and lighter and after less than a month the ascites and pleural effusion had completely disappeared! Things continued to progress smoothly until my 30wk check-up. It was at this visit that my doctor noticed a significant size discrepancy between my babies. My son was measuring quite a bit bigger then my daughter and after looking at the flow of blood through my daughter's placenta he noticed that there was little flowing in and little flowing out (reverse end diastolic flow). This was not good and he immediately admitted me into the hospital. I was given steroids and wasn't expected to make it more then 24hrs, but lucky for me and my babies I made it another 5 days before delivering via c-section.
On May 3rd at 10:27, Carmine Antonio was born weighing 2.12 lbs and at 10:29, Giulliana Hope was born weighing 2.7 lbs. We had prayed for this day to come for so many months and now it was finally here. They both came into the world crying and I was lucky enough to give them each a kiss before they were taken to the NICU. Like most babies with congenital CMV they both had a low platelet count and my son had an enlarged liver and spleen. The first few weeks were filled with countless tests and lots of ups and downs. They were able to quickly confirm that both babies still had an active virus. They found CMV in their blood and urine, but luckily it was not in their spinal fluid.
They were immediately started on Gancyclovir and continued for 6 weeks. They received multiple platelet transfusions and they received MRI's which both came back normal. This was a huge relief for us! They both failed their initial hearing screening and have since been diagnosed with hearing loss. Carmine's initial diagnosis was profound unilateral hearing loss, but he has since lost hearing in his good ear and now wears a hearing aid. Giulliana was diagnosed with bilateral hearing loss and has been wearing hearing aids since she was 3 months old, she has since lost all hearing in both ears and will be receiving a cochlear implant. They are both significantly behind developmentally and are still very small for their age but everyday they continue to move in the right direction and that is all we could ever ask for.
After all, not everyone is fortunate enough to witness one miracle in a lifetime and our family has been blessed with two.
- Shared by their mother, Joy