Lincoln, a Heart Warrior

This is Lincoln. He is our tubal reversal rainbow baby after having 2 losses in 2020 and having experienced infertility for 4 years. Anyone who has been pregnant after infertility or a loss or multiple knows the fear that comes with that. I never had any pregnancy complications and I only needed weekly IM progesterone injections for low progesterone throughout my pregnancy. At our 20 week anatomy scan our midwife told us that they could not visualize all 4 chambers of Lincoln’s heart and that they were certain he had a CDH (Congenital Diaphragmatic Hernia) and that his stomach was in his chest. I’ll never ever forget how I felt that day and the look in my husband's eyes when they told us that he may not survive, it crushed us both. They immediately set us up with a local MFM (high-risk doctor) and he was able to get us in the next morning at 9 am. We went in and he told us that he didn’t think it was a CDH it was something called CPAM (Congenital Pulmonary Airway Malformation) and that he couldn’t say for certain if his heart was abnormal or not and referred us to a children’s hospital 2 hours from home, Riley. 

Waiting for that first appointment was so difficult. We had to wait 2 weeks to get in with them but when we did things just kept going back and forth. I had 3 MRIs, over 60 ultrasounds, 8 fetal Echocardiograms and 6 fetal care conferences and got a second opinion at CHOP. I was monitored weekly and had 1, sometimes 2, ultrasounds a week to monitor for hydrops. Most of his diagnosis was unclear and we were told several different times that they couldn’t tell us what would happen with everything he had going on. We’ve even heard multiple doctors tell us they would not even operate on Lincoln even if we wanted him to. 

At 36w 3d, I went to have a fun 3D ultrasound at a local place that does those fun ones and you get the DVD to take home and keep. Well, when we got there the tech said I had no measurable amount of amniotic fluid and I needed to be seen right away. I went to the local L&D and was diagnosed with oligohydramnios. The opposite of the one where you have too much fluid. I had none! Not even a single pocket to measure! They got me all hooked up and I was transferred to Methodist Hospital in Indy because we knew we wanted him to be at Riley. 

36w 5d and they came in and told us they were taking him out in 1 hour I had no time to prepare his heart rate was dipping lower than they liked and he needed to come out now. I remember sitting there with the neonatologist and him saying he didn’t know but expected to have to intubate him pretty quickly after coming out that he didn’t think he would breathe on his own! 

Lincoln was born 36w5d at 8:46 am 5/4/21 @ 5lbs 10oz 17in long SCREAMING at the top of his lungs! Asymptomatic to everything. He was born with:

📍CHD (Congenital Heart Disease) Complete Unbalanced AVSD, TAPVR, PA & MAPCAs 

📍CDH (Congenital Diaphragmatic Hernia) hiatal hernia and only partial stomach was pushing through

📍BPS (bronchial pulmonary sequestration) bilateral abnormal lung lesions with feeder vessels from his aorta. 

📍Heterotaxy Syndrome (asplenic & all of his organs are centralized)

📍VACTERLS Association 

—📍horseshoe kidneys

—📍imperforate anus 

—📍hypospadias (without a tethered cord) 

—📍11 rib pairs

(he also had a single umbilical artery and suffered a stroke while in-utero)

Our original hospital, Riley, would not operate on his heart and only gave us hospice options, so we had him transferred to Mott Children’s and he had his first open heart surgery to place a shunt in his pulmonary artery. We spent 108 days in the hospital before we came home! 

He has had some large hurdles to overcome in his short time already Earthside and he’s not even close to being done, but he is so strong and he is a fighter! He came out crying and fighting when they said he wouldn’t and he’s continued to do so! He’s had a Gtube surgery, colostomy surgery, one open heart surgery, and his second open heart surgery is coming up soon. He isn’t a candidate for the Glenn procedure just yet, so this next heart surgery will hopefully be the bridge he needs to grow bigger to qualify! 


1 comment

Wow, what an amazing story! May he continue to be blessed by this world!

Theresa Ndidiamaka Redford

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