Parents: Stephanie and Vincent Davi
Hometown: Salinas, California
Twins Carried to term
Abigail Marie and Emily Elizabeth’s Story
Sometimes Angels Come In Pairs…
Our beautiful baby girls Abigail Marie and Emily Elizabeth Davi, identical twins, came into this world on August 30, 2007. Abigail spent 1 hour and 13 precious minutes with us before going home to Heaven and Emily stayed for 10 wonderful days. They taught us love, compassion, and to appreciate every day of life God gives us. They truly were Angels sent to spread that message. They were reunited on September 9, 2007. Here is our story…
Our journey began in January 2007 when Vince and I found out we were pregnant. When I was about 11 weeks along I had a nuchal translucency test that came back normal. At that visit, the ultrasound showed 2 babies! The tech said, “We saw 2 last time, right?” We were so excited. Vince jumped up and yelled “Yeah!” We knew we were being blessed! About 4 weeks later, we found out we were having girls! Again, the excitement grew.
When I was 22 weeks along, the routine ultrasound showed choroid plexus cysts on both girls and one girl, Abigail, had a diaphragmatic hernia, which is a hole in her diaphragm. Her stomach and part of her liver were up in her chest cavity, and her heart was misplaced to the right. With these organs in the wrong position, her lung development was poor since this was so early in the pregnancy. She would need surgery immediately after birth to give her any chance of surviving. The perinatologist informed us of the risk of T18 but felt that it was low, due to my age (25) and both of our family histories.
When our FISH test (the preliminary amniocentesis test)came back negative and our AFP screening came back normal we were so happy, and the plan remained to take Abigail to surgery immediately after birth. But the amnio results later showed T18. We decided not to terminate, wanting God to decide when our girls would go, not us. Other tests showed that our girls’ organs were functioning well. And I had done research; I knew there was still a chance of them living a long life- even if it was only a 10% chance. We were ready for any disabilities they may end up with.
Our university hospital perinatologist explained that with the 18th pair, our girls had 1 normal chromosome and 1 extra long chromosome that was two “18’s” connected to each other- an entire replication and an incredibly rare presentation of T18. The FISH test was not accurate because it only measures if there are 3 separate chromosomes. It was “full” T18 and in every cell. They had a grim outlook and asked us if we wanted to terminate, ready to immediately take me down stairs to begin the process, but I refused. The doc also said that their team would not be doing the surgery that Abigail needed because she probably wouldn’t survive it anyway. He made me feel like this diagnosis was her death sentence- like she didn’t deserve a chance at life. What if she was a fighter? He didn’t know that. He wasn’t God, though I felt he was trying to play the part (Later on in this journey I would realize that he had seen way too many T18 babies, and he was trying to spare our little Abigail pain). My girls were kicking me the entire time this meeting was going on- like they were telling me, “Hey, we’re alive in here and we’re not going anywhere!”
The weeks went by and we tried finding a surgical team that would do the hernia repair on Abigail and every response was the same. At about 32 weeks, we finally decided to stop trying to find surgeons to help us. It was a hard decision, but maybe all of these “no’s” meant something and maybe our little girl couldn’t be saved. But we still had hope. Afterall, God is capable of giving us miracles.
We decided to continue and prepare for 2 little girls because that’s what we wanted to bring home with us- 2 baby girls! For a while, I was able to put aside the fact that my girls had this defect and focus on the miracle that very well could happen. The prayers had to count for something, I thought.
We decided to have our girls here in our city. At the big university hospital, they wouldn’t even let me have a cesarean. They felt putting me at a surgical risk wasn’t necessary because my girls were going to die anyway and if I labor, they’d have me deliver naturally and “let nature take it’s course” if they go into fetal distress, which they were likely to do. What? In this day and age, they tried telling ME, a woman carrying TWINS who may have only a short time with them (according to their own predictions) that I can’t choose to have a cesarean! But my doctor here in Salinas was great. Though he never denied the reality of what could happen, he let us make many of our own important choices about my care, which made things easier in a time when we felt so helpless.
Angels are Born!
Finally, August 30th came around, the day of my scheduled c-section. I was 37 and a half weeks along and my belly was huge-with twins and with polyhyrdaminos. We decided before then not to intubate Abigail because it would only prolong the inevitable- it would not ventilate her enough to sustain life due to her tiny lungs. We knew that our time with her would be short but we were going to make the most of it.
Abigail came first and Vince said she immediately looked at him like “What the heck is going on?” When she didn’t cry, I knew that she wasn’t coming home. That was the first thing I thought- she’s not coming home. We were devastated. They put her on my chest and I felt her shallow breaths. She was the most beautiful thing I had ever seen. She stopped breathing after about 10 min but her heart kept beating.
Emily came out immediately after Abigail. She didn’t cry either and that scared me so much. She was purple and limp. My heart felt like it stopped. But they resuscitated her and when I heard her cry, it was the best thing in the world. ‘My baby is okay’, I thought.
After surgery I went to recovery, Abigail still on my chest. We spent time just holding and kissing her, telling her we loved her. They brought Emily in and said she would need oxygen for a while because her lungs didn’t quite sound like they were strong enough yet.
I let Vince take the girls to see our family.They were baptized and given last rights by our priest. They were brought back to me in recovery and that’s when Abigail’s heart stopped. I was heartbroken, but I knew that we’d done everything to spare her any suffering and I knew she was now in Heaven. It gave me peace to know that she was going to be our families’ Guardian Angel, watching over us while we heal from losing her, and watching over her sister so that she could continue to do well. We kept her with us until midnight. It was so hard to say goodbye. Our hearts were broken but we knew we had to stay strong for our little Emily.
Emily continued to do well. She tolerated her tube feedings and got to take the oxygen off after only 2 hours. Her vitals stayed normal. On the 2nd day, she even sucked small amts of formula. But she had a heart murmur and the docs suspected PDA(when a duct in the baby’s heart stays open after birth and lets blood back up into the lungs, causing heart failure if it doesn’t close on it’s own or isn’t repaired). But the murmur got fainter every day and her vitals stayed normal. She also had retractions (when you can see the chest dip in with every breath), which usually signals respiratory distress. But she stayed comfortable and her oxygen saturation was above 95% on room air- a very good sign. The doctors explained that smaller babies breathe harder and faster sometimes. Before we went home, I asked if we could get diagnostic tests of Emily so we knew what we were up against. But the doctors refused, saying it would only be necessary if she goes into distress. And even if she did, they said there would not be much done because of her T18, again making me feel like this was a death sentence for my baby.
We went home that Sunday, September 2, continuing to do well but I still worried about the breathing. She was doing great in every other aspect- tolerating feedings, peeing and pooping – we were so thrilled! And the most important thing: she wasn’t having any apnea episodes that we read about happening with T18 babies.We thought that she was going to make it and be that small % of T18 babies who live a long life.
We were so in love with our Emily, yet it was hard not having Abigail home. We would feed her and wonder ‘What would Abigail be doing if she was home right now?’ ‘How big would she have been by now?’ It was such a surreal feeling, like being in the twilight zone. We were so happy but so sad at the same time.
Emily was such a handful, but oh, such a joy! It took 3 of us just to give her her first bath! Our families stayed with us every night- they cooked and watched TV and laughed- it was the first time our families really connected. It was nice having a full house. And on top of it all, our Emily was doing so much better than our doctors expected.
We were wrong…
Trouble started on her 2nd doctor visit, 5 days after she came home. He said that her murmur was worse and that her heart sounded like it was pumping harder. Also, there seemed to be a little fluid in her lungs and her liver was enlarged. He felt that her PDA was getting worse and causing fluid retention and that some lasix might remedy the situation. We knew that none of the university hospitals would help us, so we prayed the lasix would work.
That night and the next day were okay. The midnight feeding Saturday went fine and she fell right back to sleep in my arms, as she always did. At about 2am Sunday morning, an hour before her feeding, she woke up crying. We always had to wake her up for her feedings so this wasn’t normal. I couldn’t console her and there seemed to be no obvious reasons for the crying. Then all of the sudden she turned pale. She was breathing but we jumped in the truck and took her to the hospital, just 2 minutes from our house, 1 if you step on the gas.
In the ER, she stopped breathing but they were able to resuscitate her. The staff finally got her stable with a C-PAP machine. X-rays showed that her lungs had no fluid but they had never fully developed and were too small. Her heart was failing and was incredibly oversized from working so hard, further impeding her lung volume. Her labs showed that she was not exchanging oxygen in her cells, even after being on the C-PAP for almost a half an hour. She was retaining carbon dioxide and her levels were incompatible with life. There was nothing that could be done. If we decided to intubate her, it was likely that the pressure they would have to give her to adequately oxygenate her could rupture her small lungs. And to leave her on the C-PAP, which made her uncomfortable, would only prolong the inevitable- we were going to have to say goodbye.
We took her off the C-PAP and just kept her on oxygen, giving her morphine for the discomfort. We took her home because there was nothing they were doing there that we couldn’t do. She was at peace at home- in my arms surrounded by love and family. She was such a fighter- she had many apnea episodes, sometimes for a few minutes long, and then she’d come back to us with a hard cry. Finally, at 6:05pm, she went home to Heaven.
I thought we could prepare ourselves for their birth and whatever God chose as our path thereafter, but nothing could have prepared us for losing our babies. The pain is so intense. It is indescribable. It comes in waves and changes in many ways; sometimes it’s a sharp, stabbing feeling, and sometimes it’s a dull, throbbing ache. Either way, it consumes me.
I truly believe that my girls were here for a purpose: to teach us the true meaning of love, the importance of family, and to live every day to the fullest. They were loved by so many and changed so many lives in their short time here. They are now Angels in Heaven, without pain or suffering, playing with the other baby Angels. They don’t live with the worries and cares of this world. This is what gets me out of bed every morning. This is what helps me when the pain gets too hard. Vince has been my strength, too. Our relationship has grown in many ways. Though we will never forget the precious moments with our girls, we will get through this.
I hope my words can help another mom. I am very fresh in my grieving but for me, it helps to hear other moms stories- and you dads out there, too! Know that your children will be safe, no matter what God chooses for them; pain free and playing in Heaven.
You can find a tribute video made for our girls at: Video It is Emily’s online obit (you can also find Abigail’s through that site). There you will find the link to their video. In the beginning, Abigail is the baby without oxygen and Emily is the one with it. If anyone needs someone to talk to, share feelings with, or just vent, feel free to contact me at firstname.lastname@example.org whether you are expecting, caring for a child, or are grieving one.
UPDATE, MAY 2009: Abigail and Emily are still in our hearts and on our minds every single day. Many days are still very hard for us but we try to focus on the fact that they were, and still are, a very special blessing sent from God. We also have a new blessing- a new healthy baby boy, Baelin Ace, born December 3, 2008.