Twins – Baby Lanes’ Survival Story and Baby Bennett’s Story.

March 31st, 2013 by Lindsay

On January 18th 2013 I went into labor with my twins…at 25 weeks. My twins suffered from twin to twin transfusion syndrome and I underwent laser surgery at 17 weeks to correct the problem. The procedure worked and my twins thrived afterward. The procedure did put me at risk pre term labor, but I never expected this. They started magnesium, but it didn’t even touch me and within a few hours my babies were delivered by emergency c-section. Lane Joshua weighed 1lb 5oz and Bennett James weighed 1lb 4oz.

Lane struggled with breathing and other issues the first few weeks. I was just looking at the notes I would write when talking with the NICU nurses. Next to Lane’s name I would have a paragraph of issues. Then there was Bennett, in every entry, doing great, no problems. He was our strong twin and smooth sailed through the first few weeks. On Saturday, Feb 10th I arrived at the hospital to find my usually very active Bennett very lethargic. Though he had a breathing tube , and I couldn’t hear his cries, I could see on his face he was crying. The nurse told me he had vomited some green stuff and they were stopping his breast milk feelings. They got an abdominal X-ray and started him on antibiotics. Bennett was sick, but he didn’t show the major signs of NEC. Our doctor did talk about the possibility that is what he had, but he did not believe it to be a serious case. There was no air in the abdomen, his vitals were good, could have been extubated if he wasn’t fighting an infection. No need for surgery at this point, they were going to watch him and see if the antibiotics took care of it.

On Friday, Feb 15th, Bennett had not shown signs of improvement and his belly was looking much more distended. Our Doctor recommended airlifting him to Minneapolis to be evaluated by a pediatric surgeon. Absolutely let’s do it. Let’s get this problem taken care of so I can have my baby back. My husband and I arrived to the hospital on Saturday morning. The surgeon spoke with us and explained that his team was split half and half on whether to take Bennett to the OR. He just wasn’t showing major signs of enough distress. There was still no air in the abdomen so they though he may have a small bowel obstruction or stricture. He did mention that worse case scenario would Bethany its NEC and there could be a large portion of dead bowel, “but I’m not expecting that”. On Saturday night they finally decided to do surgery.

When the surgeon and the neonatologist came in the room I knew it wasn’t good. The surgeon explained to us that Bennett’s entire small intestine was necrotic and needed to be removed. My husband and I are both in the medical field and knew what that meant. The mom in me though was waiting for them to tell me some miracle procedure they could perform to help my son. What’s next I asked? We recommend you withdraw support. It was the most awful words I have heard in my life. How does a parent do that? Early Sunday morning Bennett passed while he was laying on my chest. He was 4 weeks old. I’m angry I had to go through this. I’m angry I had to make the decision to remove support. I’m angry my son had a horrible case of NEC and did not present more symptoms. I’m angry that I no longer have my son and his identical twin no longer has his brother. It’s an awful thing and I wish I had more answers. What caused it, how long did he have it, what if they would have gone in earlier? I am glad I found this website though, and sympathize with other parents who have had similar experiences.

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