Parents:
John & Andrea Kinne
PO Box 179
Kootenai, ID 83840
Although I don’t have a computer,
you can reach me - Andrea Kinne, by email
via my friend, Tammie Shields tramie67@yahoo.com

(208) 265-0102
We would be happy for anyone with questions or in need of support to call us.

7-30-08
These are our experiences before and after Ian was born.

The purpose of this writing is to give glory to God and to possibly help someone in a similar situation. There are also ideas on how to show love and care to people, who are going through something like this.

Ian has one brother and three sisters. At 20 weeks into the pregnancy we discovered that Ian had multiple anomalies, all of which as a combination pointed to Trisomy 13. Abortion was not an option. We knew we had to do everything to protect this Baby, keep it healthy and help it live. Because of the risk of miscarriage we decided against amniocentesis. It still would not pinpoint Ian's unique medical needs even if it tell us he had Trisomy 13.

Hospital doctors were happy to let me alternate between checkups with them and with my midwife who sent her reports to them. It made things less expensive and less stressful for us and we were thankful. One question we were asked before the birth was, "What do you want us to do for your baby?" Our fear was to have our baby on all kinds of life support equipment and we might be burdened with the decision over his life or death by the switch of the machine. The Neonatologist advised us that in her experience it was better to provide any medical treatment need and eventually end up turning off a machine, knowing one did everything possible for the baby, than for the baby to die and us to think, "If only we had agreed to more aggressive treatment he would have lived." This was an answer to prayer for us. At every turn God showed His mercy and providence in helping us make decisions. We were very thankful that He connected us with wonderful doctors who were truthful and yet compassionate, kind and hopeful.

Because of our decision to help our baby live we chose a large medical center with an excellent neonatal intensive care unit for the delivery. Since it was a two hour drive from us we took the doctor's advice to induce labor about a week before the estimated due date. A dear friend was with us during labor and stayed with us at the hospital another day after Ian was born. Against all expectations Ian had to be rescued by emergency C-section after the placenta detached about halfway through labor. we are so thankful for the team's fast action. Ian spent 3 weeks and two days in NICU. The last 7 days were necessary to finish a course of IV antibiotics for an eye infection. At 9 days of age Ian had a G-tube put in, since several attempts at nursing or bottle feeding ended in great panic; Ian would always decide to eat rather than breathe. Ian loved tastes of milk though and sucked on his pacifier with gusto.

I was supposed to be discharged three days after delivery and when the kindly doctor decided to have me stay another day it was like the hand of the Lord on my shoulder. I just didn't feel ready for the move to the nearby Ronald McDonald house. The love and dedicated effort with which doctors and nurses took care of Ian was such a blessing. Many of them had looked at this website and approached Ian's condition with hope. Instead of a time of gloom this helped to make our time with Ian a time of hope as well.

We could finally bring Ian home on Thanksgiving Day! When we came home I found that an azalea in our window was blooming. The plant had been in bloom during my pregnancy and after a brief break, continued to bloom until after Ian's death. What a comfort and reminder of God's love this was to me. After 6 days at home and much screaming from Ian we discovered a hernia while at the pediatrician. We rushed Ian back to his birthplace and he had surgery the next day. Because hernias are common with Trisomy 13 and because only a hernia on one side was visible, we asked the surgeon to check the other side as well. After surgery the smiling doctor told us, it had been a good thing she'd checked the other side as she found a hernia to repair there, too. Once again the Lord had given us wisdom for Ian's care.

Back at home again things went a little calmer for about two weeks. However, Ian had been screaming and holding his breath when something upset him. He would pass out and then start breathing again. This was nothing new, he'd been doing it while still in NICU and we'd just give him a little blow-by oxygen. These spells were getting worse however and I began to wonder, if there'd ever be a time when he wouldn't readily start breathing again after his screaming. The time came on the Thursday night before his death. We called 911 and did CPR. By the time someone came Ian was almost back to normal again and we declined the offer to take him to the hospital. We would see the pediatrician the next day.

At the hospital we heard that nurses had to "bag" Ian but we never learned the procedure. The pediatrician told us, Ian didn't need CPR but rather puffs of oxygen to start his breathing again. We were happy to know what to do now. Sadly we got to use our newly acquired skills all to often; Sunday afternoon, then Thursday at the hospital for a heart checkup. Ian's heart defect was not life threatening and his heart was strong, but we were told to be prepared for his death because of his breathing problems. We took him home and met with hospice nurses the next day. To be honest, my reason for calling hospice was to get help with Ian's care, especially at night as John and I were getting very worn out physically and emotionally. Ian was awake and happy when the nurses were with us. He slept a lot all afternoon. Friends had been with us that afternoon and stayed for supper. After that Ian started his crying and breath holding spells again and we had to bag him after each one. We felt that the procedure was wearing him down and decided to turn off his monitor and not to use the oxygen bag at the next spell. We called the hospice nurse back, thinking that Ian would pass away at his nest screaming spell. Yet, the next spell went exactly as all the others. He stopped breathing for what seemed like an eternity, just as he had done before, then started breathing again all on his own just as he had done when we had puffed oxygen into his lungs! Ian still passed away from his breathing problems later that night. It was such a blessing to have the hospice nurse there and also our friends who stayed with us when things turned grim.

We are glad Ian passed away at home with us. I got to dress him and wrap him in his special blanket. My husband made Ian's casket and we all as a family got it ready for Ian's body. His oldest sister made a beautiful arrangement of roses to top the casket and we helped set his gravestone later. Our four Children were all able to say goodbye to Ian before his death. We have been and still are blessed with much prayer and the support of dear friends, some of whom are also grieving the loss of a baby.

One issue, I wish we would have had more knowledge about was the use of morphine. As I've mentioned before, we were impressed with the kindness and compassion of doctors and nurses involved in Ian's care. Yet, in NICU Ian's Trisomy was approached more as a condition to live with rather than a condition to die from, as the approach was after NICU. One aspect of that was that in NICU morphine was not used except after surgery while Ian was still on the respirator. He was taken off the morphine, before he was taken off the respirator, because it could interfere with his breathing- so we were told. When things began to look bad and we dealt with a different doctor and hospice nurses we were told that Ian should have morphine to ease his laborious breathing. I think Ian's breathing difficulties were caused, at least in part, by his cleft lip and palate and frankly the morphine didn't ease it at all. At times I'm not sure it didn't speed Ian;s death. I write this in hopes that parents and medical professionals will research the morphine issue for Trisomy 13 babies and kids in order to be prepared to help them live.

Looking back on Ian's life, we are exceedingly thankful for his safe birth and everyone of the 50 days of his life. The joy at being able to hold him, feed him, rock him, carry him around and feel his little hand around our finger was beyond description. Friends have given us some Christmas ornaments with Ian's name on them or other gifts in his memory. It is a comfort to know he is loved and remembered by others as well as by his own family. When I was still pregnant our church had a special prayer meeting for Ian and our family which included refreshments and some beautiful gifts for my hospital stay. We were showered with loving cards, hugs, prayer, meals, gifts, financial help, babysitting and flowers from the time we first found out about Ian's problems to long after his passing.

I am hoping that through our experience others can be helped. so please, feel free to call or write. We are grateful for this website and all who contribute. Especially to Therese Ann who visited with me on the phone after Ian was born and who spend so much of her precious time on the computer to organize this website.

Andrea Kinne
You can reach me by email via my friend,
Tammie Shields tramie67@yahoo.com