I was 22 weeks into my second pregnancy (my oldest was just 13 months when conception occurred), when I found out that I was carrying twins. Unfortunately both of the twins had medical issues present in the ultrasound. My son Joshua (Twin A) had a case of post-urethral valves, and "markedly small polycystic" kidneys, and my daughter Nadia (Twin B) had a 2 vessel umbilical cord and was significantly smaller than Joshua indicating possible in utero growth retardation.
During the first ultrasound the doctors were far more concerned about Nadia than they were about Joshua. She was much smaller and did not move at all during the ultrasound. Both birth defects are relatively common in the population but a 2 blood vessel cord has a high rate of fetal death and other abnormalities (or so we were told). Joshua's birth defect meant that his bladder was unable to completely void out all of the urine present. For the majority of children this requires outpatient surgery at or near the time of birth. We however were not so lucky. By the time 31 weeks gestation had been reached, the doctors were very concerned about Joshua and unconcerned about Nadia. Nadia had continued to grow at a relatively normal rate in utero and was seen very active in at least one of the 5 ultrasounds that we ended up having. Joshua, however was a much different story. His urethral blockage ended up turning into a case of urine reflux from the bladder to the kidney. He no longer had any amniotic fluid and his lungs appeared to have stopped growing. At this time we were told, "If he was not a twin, I would recommend that you abort. However, because twin B looks like she will be OK, I would recommend that you take the pregnancy to term but know that your son will die at birth. You can however choose to deliver now. It is the only chance of survival your son has but recognize that you are putting your daughter at risk for cognitive issues, and CP".
We chose to deliver but the doctors decided that they wanted to do some more testing on Joshua first. So I was subjected to an amnio like procedure, where they removed all the urine from his bladder for lab testing and then waited to see if the bladder filled back up again. When the lab tests came back indicating that he had at best 10% kidney functionality, we were once again recommended to take the pregnancy to term and let Joshua die. But we chose to deliver. We were sent to the best NICU in the Chicago-land area and had an emergency C-section at 31 weeks and 3 days. Joshua came out weighing 4 lbs and 3 oz. and Nadia came out weighing 3 lbs. and 11 oz. The babies' health appeared pretty good at first. Nadia didexceptionally well. She required no respiratory intervention and was nursing 18 hours after birth. Joshua on the other hand did not fair as well. Within hours of birth he was ventilated at 100% oxygen. Both lungs collapsed. It took about 7 days to get him off the ventilator and chest tubes. His GI tract did not function until approximately 2 weeks after birth. He had primary pulmonary hypertension. His kidney function was at less than 10% and decreasing daily and his liver function was very poor. At 7 days post birth he was transferred to the local Children's Hospital because the NICU where he was born could no longer help him. Once he arrived at Children's Hospital we met with 2 nephrologists (kidney doctors). They gave us completely divergent opinions. One doctor wanted us to start him on dialysis immediately and insert a tube into his belly button, so that he could urinate out of his belly button. One doctor wanted us to sign a Do Not Resuscitate order. The second doctor believed that Joshua had no chance of survival with or without dialysis. We were told many, many horrible stories about the kinds of ways that Joshua might die with or without dialysis and informed that the least painful death for him would be to die in his sleep during one of the hourly respiratory events that he was having. We were told all of the pain and suffering that we would have to go through to keep him alive. We were told that many marriages fall apart with this kind of stress.
We went home and prayed. All I could think was how can I care for a 20 month old, a preemie girl and a preemie boy with medical problems. How can I handle all the care of dialysis, the Picc line, the 20 meds a day he will require? How can I do this alone? How can I pump enough milk for him and get Nadia to nurse? I didn't want to let my baby die, but I certainly could not see how I could keep him alive. So I offered it up as "Thy will be done". God answered our prayers. The next day we went to the doctors and said, "No we will not sign a DNR order and we will not put him on dialysis now. But you will perform corrective surgery to allow him to urinate on his own." The doctors fought us but in the end performed our will. After the urethral valve resection, Joshua began urinating on his own. His GI tract began functioning, his liver and kidney function improved and he started nursing. 7 weeks after birth Joshua went home without any tubes. The doctors were amazed. He was taking in all his feeds orally and even nursing a couple of times a day. But his kidney function was only 15%. He required medication every 1-3 hours all day and nite. Because he was so very small and needed to grow as fast as possible we had to feed him every 2 hours. Because he could not tolerate the one and only renal formula on the market, I had to pump every 3 hours for 14 months. But he did hold his growth curve and he did develop. Eventually at 10 months, he became so sick that he shut down orally and was restarted on the NG feeding tube (through the nose). All nite long he was filled up with food and every nite he would wake up and puke. But finally he reached the magic weight of 18 pounds and he was able to be transplanted. 15 months after birth Joshua received my entire left kidney. His recovery was difficult. But now at the age of 2 ½ years, you would never know or believe that we were told to let him die. He is the most active little boy that I have ever seen. He is completely caught up in every area of development. He didn't touch any food until he was 21 months old, but now he is the best eater. He was too sick to be able to stand up until 18 months, but now I have found him hanging from my chandeliers. He never said a word until 19 months, but now he talks in complete sentences all the time. They were afraid that he would be cognitively disabled because of all the oxygen deprivation during the first 7 days, but all testing indicates that he is well above average intelligence. His only difference in life is that he takes 3-4 drugs a day, and has his blood drawn once a month but other than that he is our healthy miracle baby.
The suffering for us was intense. My husband and I did not sleep more than 2 consecutive hours a night, until he came off the feeding tube at 24 months. The constant stress on us did cause great friction and pain in our marriage. But we are still here and I would not take that suffering away for all the money in the world. We have given the gift of our little miracle to everyone we know. His life has created so many other miracles, the conversion of myself and our friends and family. As for his older sister, she too suffered greatly. She watched so many doctors inflict pain on him. She saw him puking incessantly. She watched mommy and daddy give him shots and draw his blood. She spent 2 years without activities, because I could not tote Josh around to swim class or library time. She did not get the attention that she deserved. But she is the most compassionate 4 year old that I have seen. Her ability to empathize with other children's pain is incredible and far ahead of her age group. She is so used to seeing children with medical equipment attached to them, that it doesn't faze or frighten her.
The doctors' in utero diagnosis was both correct and incorrect. The doctors' prognosis at birth was both correct and incorrect. The doctors' wrote off his life in the beginning because of these prognoses and his slim statistical chance of survival. They placed no value on the suffering that saving his life would entail. All they could see was the monetary cost and the decrease in our quality of life. Since I had not been sterilized after the birth and was under 30 with no fertility problems, it was suggested to us to let Josh die and try again for a healthy baby. Why should my fertility and age make a difference in the "value or worth" of my own child's life? Would his life have meant more to the doctors if I had been 45 with no other children? If we had never taken the chance and suffered the pain, we would never be experiencing the joy of watching our "disabled child" outrun, outclimb and outmanuveur most healthy little boys his age. Don't let a doctor talk you out of a birth or a chance for a miracle just because it would inconvenience them or because they don't value life. You might regret it for the rest of your life.