Meet Lochlan

Lochlan was born on May 16, 2013, 19.5in 7lbs 4oz. I was induced at 40 weeks and 2 days because Lochlan's umbilical cord only had 2 vessels. At 19 weeks gestation, during the ultrasound in which we were to find out if we were having a boy or girl, we were alerted to a handful of "markers" that led the doctors to believe that there was something seriously wrong with our pregnancy. Lochlan had a 2 vessel cord, a second superior vena cava in the heart, multiple cysts on the right kidney, echogenic foci in the heart, and choroid plexus cysts in the brain. I was told that there was a great likelihood that our baby could have a trisomy, but the only way to tell would be to undergo a amniocentesis. Adam and I agreed wholeheartedly that termination would not be an option for us, so we proceeded with the pregnancy without an amniocentesis. Together we made a concerted effort to hope and pray for Lochlan to be healthy, but with one functioning kidney. We went through many emotions during the pregnancy, but we did stay as positive as possible.

Lochlan was born at 3 in the afternoon, was briefly looked over by a nurse, and was handed over to breast feed. Lochlan cluster fed on and off until 9pm when he fell asleep and was taken to the nursery. I noted that he was fussy, but other than that, no one suspected any problems. Lochlan would not nurse at 4am the next morning, so checked to see if he had pooped. When I inspected his bottom, I realized he had no anus. He was quickly rushed to NICU at Albany Medical Center.

Upon arrival, Lochlan was diagnosed with VACTERL association.
Vertebrae: fused coccyx that should never cause him any problems.
Anus: Imperforate anus- bowel formed fistula with bladder.
Cardiac: Second superior vena cava, PFO.
No Tracheal or Esophageal problems (that we know of).
Renal: Non-functioning multicystic right kidney, dysplastic left kidney, chronic renal failure, and severe stricture of the urethra.

Lochlan initally had a colostomy placed, had anoplasty at 3.5 months, and a colostomy reversal a few weeks ago. Lochlan's renal failure has been his greatest medical problem that has had a profound cascade effect on his overall health. He is chronically anemic and gets Procrit injections weekly. He has a poor appetite and does not nurse nor eat much orally, so he has a feeding tube. Because of hormonal imbalances and poor caloric intake, he does not grow well. He is below the 1st percentile on the growth chart. Although he still urinates, his left kidney continues to struggle. He does not concentrate his urine and needs a salt substitute. He also takes calcitriol to aid with parathyroid function. Although none of the doctors have a crystal ball, they are fairly certain that he will need a transplant by his 2nd birthday. Lochlan's narrow urethra is putting further strain on his kidney causing severe vesicoureteral reflux. Tomorrow, we travel to Boston Children's Hospital to see one the best Transplant Urologists in the world.

We were introduced to the great BCH in August. Before meeting the transplant team, Adam and I were faced with a decision of end of life care or continuing on in hopes of Lochlan receiving a donor kidney. Boston restored our hope that Lochlan will someday live a somewhat healthy life. Because Adam and I do not match Lochlan's blood type, we will not be able to donate a kidney to him. His best chance for receiving a kidney before he needs dialysis is to find a good samaritan who is willing to donate a kidney. The donor must have a blood type O and stellar health. Once Lochlan has reached 65cm (about 26in.), and his urine output starts to deteriorate, BCH will be able to transplant an adult kidney into him. If he receives a kidney from a live donor, the kidney could last him 20 years. How amazing is that!?