Our son had been diagnosed with Posterior Urethral Valves when I was 17 weeks pregnant. His bladder was distended and full of urine and it backed into his kidneys. Causing severe damage to both his bladder and kidneys.
From 23 weeks, Matthew had little to no amniotic fluid. At this time we were told over and over and over again that Matthew was not going to survive much longer in my belly… our only son.
At 26 weeks, doctors conducted a procedure called a vesicocentesis, similar to an amniocentesis. Doctors will go through my belly and drain Matthew’s bladder…all in utero. This, by far, was the most painful thing I have ever felt in my life. I had no pain medication other than a local anesthetic.
At 29 weeks, we saw that his bladder was full again… but because of his already bad prognosis, doctor’s did not believe any procedures would help. Also, because of the risk to our perfectly healthy twin girl… going through with another procedure became an ethical issue. Risk one twin over the other?? One healthy twin versus a very sick twin??
We prayed and prayed and convinced the doctors to go through with a second procedure.
The doctors went in through my belly…into Matthew’s belly and drained his bladder again. During this second procedure, I was able to get a spinal block for the pain. Thank God! The doctors placed a shunt in his bladder so that it can continuously drain into his sac. And to help, doctor’s cut slits in Twin sister’s amniotic sac and then in Matthew’s sac so the two can share amniotic fluid…by the Grace of God, Callia had a little more fluid than she needed.
We were again told on numerous occasions how it might be too late for his lungs to have developed because it had been so long that he was without fluid… we told the doctor’s and believed that IT WAS ALL IN GOD’S HANDS.
At 31 weeks by emergency c-section ..due to a placental abruption, the twins were born. BOTH breathing. .BOTH crying… BOTH alive.
God is Good!
Matthew was born first, weighing 5lbs. 2oz and 17 in long. Callia was 3lbs. 12oz and also 17 inches long.
Callia was placed on assisted breathing for only a week. She was already strong and she was definitely a fighter. She had no complications due to her early arrival. She just needed to learn to drink from a bottle and gain weight. Which she did. She was discharged from the NICU when she was 8 weeks old.
Matthew was born with pulmonary hypertension, bleeding in his brain, fluid in his brain, kidney failure and collapsed lungs.
Day one…. day two… day three… every few hours we were told that he was not going to survive much longer. Day four…five….six and then day seven…. doctors finally said that since he is fighting to survive, they will now make a care plan for Matthew.
On July 15, my birthday, Matthew was two weeks old when he had his first surgery. Surgeons placed a catheter into his abdomen in preparation for dialysis. From July to October, Matthew has had eight surgeries. Because of the blockage in his urethra, doctors made a vesicostomy in his abdomen. (vesicostomy is when an incision is made from the outside of his abdomen and into his bladder. The bladder is pulled up to the incision and in time, he will urinate through this “hole”) He also had surgery for hernia. The other surgeries were for catheter replacement and revisions.
On October 1st, was Matthew’s last surgery. It was, by far, his hardest surgery. HIs tiny body was having a hard time recuperating from the surgery. Doctors, once again, told us that they did not think Matthew was going to survive. The dialysis was not working causing the toxins and fluids fill his body. Fluid was filling his lungs and the pressure of his swelling was so severe, it was causing problems with his heart. Matthew was very sick. But with many many prayers and the enormous amount of fight in Matthew, he pulled through. Definitely a miracle. From one day to the next, Matthew’s dialysis began working. Doctors don’t know how it started working, but it did. And within a week, he lost 4 pounds of fluid and began to get better.
My husband and I began to train to use the dialysis machine in order to bring Matthew home. We learned how to do his cares such as medications and feeds. Because Matthew is on dialysis, he has had an aversion to drinking from a bottle, so a tube was placed in his belly to where we can give him his formula directly into his stomach.
During the entire time, from pregnancy to now, my husband has been by my side. We have gone through everything together.
After almost five long months, on November 20th, Matthew was discharged from the NICU. We currently do his dialysis at home. He is on a 14 hour program and I am the one that gives him his medications and feeds. My son needs 24 hour care.
Matthew has an appointment at the Loma Linda Kidney Center once a week. He is starting physical therapy and occupational therapy. Because of the bleeding and fluid in his brain, we will not know the extent of the damage done until we begin therapy. As of right now he is currently growing at his adjusted age.
Because Callia was a preemie, she herself has had some breathing problems. Both her and Matthew will be seen at the high risk infant clinic at Loma Linda Children’s Hospital every three months for the first couple years of their life.
Matthew will stay on dialysis until he is placed on the transplant list. Matthew is currently in renal failure and will only survive on dialysis. He needs to reach 22lbs in order to get on the transplant list. If Matthew doesn’t find a donor within the first three years, by the time he is 3 years old, I may be able to donate my kidney to him. As of right now, I am his prefect match.
We have a very long road ahead of us, but the sacrifices we are making right now, are going to lead to a long, blessed life.
WebsiteCHILDREN WITH KIDNEY DISEASE: https://www.facebook.com/Children-With-Kidney-Disease-1648529632093135/?ref=hl