My first baby was born in 2008. After two years of infertility we were completely overjoyed and blessed to have her. Breastfeeding came very easily for us and I was very grateful for that having watched friends struggle. Our second came in 2010 and again, a smooth and easy breastfeeding relationship. My husband and I thrilled when baby #3 was on the way, due date of June 2013. The pregnancy was different from the beginning, low blood test numbers, morning sickness, measuring a week behind at an early ultrasound but everyone kept assuring us that every pregnancy was different and baby was growing so that was good.
I decided to do the first trimester screen for the first time, I was feeling a little uneasy and why not get an extra peek at our miracle? 30 minutes into the ultrasound and it was obvious something was very wrong. The tech asked us to wait for the doctor and it took him about 45 minutes to come into the room. He explained that there were some serious problems that seemed consistent with a genetic defect and that we needed further testing. He had already consulted with my ob, their geneticist, and a specialist to do the testing. They were all outside the door waiting for us. We were shocked and stunned. The doctor went on to discuss miscarriage, termination, birth defects, pregnancy complications and so many other things. We shuffled from room to room for 4 hours that morning and finally left after a CVS to get a full genetic workup. My obstetrician, whom I love and trust, was the one to call me the next day with the diagnosis: my baby boy had Trisomy 18.
Trisomy 18 is a genetic condition where the child carries a third copy of the 18th chromosome instead of just two. There are three common trisomies: T21 – known as Downs Syndrome, T18. and T13. Unlike Downs, T18 and T13 are almost always fatal and are known as “incompatible with life”. There are times when a trisomy baby is the result of a problem in the parents genetics but in many cases, including ours, it’s completely spontaneous.
Over the next 2 weeks I was given info about terminating the pregnancy four times. A recent study shows nearly 86% of parents choose this route when they receive these test results. For us it was never a choice. A quote from a medical journal entry regarding the management of T18 cases sums up our feelings best: “Infants with lethal congenital anomalies … continue to have immense inherent worth as human beings and these infants are without a doubt as deserving of love, care, and dignity as any child”
Over the next 6 months we prepared. We named our baby Isaac. We told our kids about a baby with a broken body. We planned a funeral for a person we’ve never met. We discussed his health problems with specialists and made decisions about how far we would go with medical interventions to keep him alive and comfortable. We discussed organ donation and made plans for our palliative delivery.
Isaac was born on May 24th 2013 at 6:30pm. He came out screaming which was the most beautiful sound. We cried happy tears, bathed him, invited our kids, parents, friends and priest to come up to love him, hold him, bless him, cry over him, kiss him, and hug him. We said goodbye to everyone about 10 pm and were packing up to move to another room when he took a sharp turn and we knew our time with him was ending. My husband and I held him and sang to him, we told him what a good job he did staying strong for us so we could have a chance to meet him. He was warm and peaceful and comfortable and left us at 10:45pm. We had 4 hours with him and they were the most beautiful sacred hours of my life.
I had thought a great deal about pumping and donating breastmilk. Because of his small size and genetic condition we were not able to donate any of his organs, this seemed like a great alternative. The milk that came so easily to us would feed and nourish other lives and his memory would live on in them. Before leaving the hospital the doctor’s only advice to me was to wear a tight bra and avoid stimulating the area to keep the milk from coming in. A quick google search lead me to more info about loss and preventing the milk from coming in. A friend I talked with had no idea that milk would even come in after a loss, she just assumed no baby – no milk. I was really shocked about how little information there was. About 36 hours after Isaac was born I decided to just get the pump out and see what happened. My husband and I discussed this, I knew it would have to be a family decision knowing that pumping takes sacrifice and commitment and I’d need his full support. Together we set a few expectations for this part of our journey. I’d quit with no guilt if it gets to be more than I can handle emotionally or the pumping schedule begins to take time needed for family and healing. I decided that pumping 3-4 times a day would work best for my family and hoped that would be enough to maintain a supply. The first week was rough, dealing with engorgement and being continually uncomfortable had me second guessing what I was doing. I called the Lactation Consultant, and found a facebook group for people who were exclusively pumping. I found myself day dreaming about stealing a baby off the street just to nurse, the pump just isn’t as effective as a baby.
By the second week my body started to adjust to the schedule and from then on things got easier. I’d pump three times a day or if my supply started dipping I’d add a fourth time. I found a website, Human Milk for Human Babies, and donated to a local preemie mom. I donated a few hundred ounces to the Ohio Milk Bank who were wonderful and very compassionate when I explained my situation.
The best part of this experience was donating to a friend. She had preemie twins, had supply problems while they were in the NICU and then came down with shingles. If ever a friend needed a helping hand it was her. I offered to ship the milk to her and explained that I needed to share just as much as she needed the gift. I boxed it up and headed to the post. When the cashier rang up my postage I was shocked, overnight shipping is not cheap. I hemmed and hawed about what to do and finally decided to use a portion of the money friends and family had donated for Isaac’s memorial fund. This is what we wanted his legacy to be, helping babies and helping families. After finally sending the package on its way I hopped back in the car, and out of my speakers came the song we sang to Isaac as he was dying. It was truly a sign. I knew then that all the time and commitment and heartache that went into pumping was all worth it. In his short life he taught everyone around us so much about beauty and love and he nourished those babies physically just as he nourished and enriched my life.
If you’d like to read more about our journey with Isaac you can check my blog Engineering the Pann’s. I’m particularly proud of the post that explains how he got his name.
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