In our April edition of our Preemie Family newsletter we learned about the Hanneman Twins – Derrick & Dominick, who were born at 33 weeks and 5 days, with Derrick weighing 5 lb. 12 oz. and who spent 30 days in the NICU and Dominick weighing 3 lbs 11 oz and who passed away after 22 days due to Necrotizing Enterocolitis (NEC).
Read more in an update by their Mother, Cari . . .
by Cari Hanneman, Derrick and Dominick’s Mother
I had twins October 28, 2013 in Tucson Arizona (USA) at 33 weeks gestation. I wasn’t due until December 11, 2013 but the high risk neonatal teams wanted to deliver early because they detected Intrauterine Growth Retardation (IUGR) in twin B. They admitted me to the hospital October 25th, and told me if twin B didn’t get any bigger by Monday that I would deliver. The whole time I had been asking risks and complications delivering pre-term because my two older children were full-term babies, and not once did anything come up about NEC.
I had my boys on October 28th and they went straight to NICU from the operating room, so I basically got to see that they had fingers, toes, and were boys before they got swept away from me. I was in the hospital until October 31st, and I was constantly down at NICU and they looked great, and again nothing was mentioned about NEC even while they were giving him formula (my milk had not come in and donor milk wasn’t suggested). Later that afternoon I left to go home (which was quite a trip – we live 90 miles from the NICU hospital) but that night we get a call saying that Derrick ( twin A ) has roaming free air in his intestinal wall, that they put him on antibiotics, took him off all feedings for 7 days, and put him on nutrient IV’s. I asked them, “DO WE NEED TO COME UP THERE?” I was told no, it is not that serious, so trusting the doctors, we stayed home.
As Derrick was fighting NEC, my son Dominick was doing wonderful and l he wasn’t on anything except for in an isolette due to him being so small he and his being unable to couldn’t hold his own body temperature just yet. At 10 days old Derrick was cleared of NEC (and as of today it looks like no damage was done to his bowels or intestines even though he does have a sensitive gut and issues with constipation). My husband and I were there and we brought Dominick over to see Derrick so they could spend some time together and all was fantastic in my little world. When we left that evening we informed the nurses that we wouldn’t be up there the next day because I needed to take care of matters back in our hometown, and they gave us hugs said our boys were in good hands and that was that.
The next morning I called and talked to Derrick’s primary nurse and he was doing great, then I spoke to Dominick’s primary nurse and she said he was doing beautifully. Ninety minutes later my world got turned upside down, sideways and every which way but the right way. My husband’s phone rang and it was the doctor, and my phone rang and it was the surgeon. In that short hour and a half Dominick went from being wonderful to his stomach excessively extended and purple and they needed verbal consent to do surgery and of course we said yes. So we got in my car and high-tailed it to Tucson. When we got there my baby boy that who looked fabulous the day before was now on partial life support, and his stomach looked like it could rupture. They gave him a 30% chance to survive the night, and did the bed side primrose (where they put the straw- looking tube directly into the intestines to attempt to drain them). He survived the night and we were told things were looking up. So every day for the next 10 days I was either up there taking care of Derrick and praying for Dominick or I was calling non-stop.
On Monday night – November 18th, 2013, we got a call that they were going to do exploratory surgery on Dominick to see why all of his complete blood counts, x-rays, and blood gases were coming back good but the swelling in his gut wouldn’t go down. We were told to be there before 7 a.m. On Nov 19th 2013 (age 22 days) we get to the NICU, we talked to the surgeons and they figured he had a dead portion of his bowels or intestines, so we were thinking positive and I kissed my baby boy and watched them wheel him into surgery. Four hours later the nurse came and got us and I knew it wasn’t good when they us took up to the furthest conference room with the double soundproof doors. The surgeon, the neonatologist, and another specialist came in and told us that what they had seen was not pretty. To make a long story short my son’s entire digestive system was gone: all but 14″ of one intestine, 16″ of another, and his colon were dead. His bowels were fused to his abdomen, and they weren’t even sure if his anus or rectum even functioned because they couldn’t get to that part of his digestive tract. The swelling in his gut was not edema from bodily fluid, but from internal bleeding from his intestines perforating (which is why during the 11 days that we were playing the waiting game he needed platelet and blood transfusions). His belly was so swollen that when they did the incision they couldn’t close it so they had to put gauze on him and stitch the gauze to his abdomen.
When he got back up to the NICU pod he was now on full life support and slowly losing his fight. After my husband and I talked to various specialists, neonatal doctors, surgeons, etc. they all said the same thing: there was nothing they could do, that his digestive tract was too far gone, and he would eventually pass away to other NEC, the infection from the incision, or liver damage. Just in the time that we were talking to the surgeons he needed another transfusion. We called family, and called my brother to bring my girls ( ages 7 and 5) up to the hospital so they could say good-bye. After they left we finally made our decision to take him off life support because he was getting weaker and weaker by the minute. We talked to yet another team of doctors and they told us he was losing the fight and gave him 10% change of living through the night. Later that night we couldn’t watch our baby suffer anymore. He had another blood transfusion, was on the highest dose of Morphine and he was highly sedated just so he could handle the pain.
We waited until most of the new moms were out of NICU and then requested that our son at 22 days old, after fighting for 11 days, be taken off of life support. We wanted our son to pass on our terms and not cold alone and on a machine while we were half way to the hospital. They let us bring Derrick over to the area that Dominick was at and they took Dominick off all the life support and handed him to me. I held him in my arms, I sang to him, I talked to him. I vowed to him that I would find out why this happens and why no one ever hears about NEC. I vowed that I will let the world know what happened to my baby boy and it would be in his honor. After I brought Derrick over to Dominick and they interlocked fingers almost like he was saying good-bye to his brother and giving him what energy and health he had left. At 9:24 p.m. on Nov 19th 2013 my little baby boy got his wings and became our angel.
Editor’s Note: Cari Hanneman is taking her story and her experience and educating others about NEC as well as educating professionals on handling families in the NICU especially in tough situations such as NEC. Should you wish to talk to Cari, please contact PreemieWorld to connect you to her.
Photo Credits: Cari Hanneman
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